Robotic Device May Help Kids With Cerebral Palsy

Those with condition known as ‘crouch gait’ had better posture and balance after 15 training sessions

By Dennis Thompson

HealthDay Reporter

WEDNESDAY, July 26, 2017 (HealthDay News) — A robotic training device helped improve the walking ability of children with cerebral palsy who suffer from a condition known as “crouch gait,” a small study found.

The device provided strength training for muscles that were too weak to support fully upright posture, explained senior researcher Sunil Agrawal. He is a professor of rehabilitation and regenerative medicine and mechanical engineering at the Columbia University School of Engineering and Applied Sciences.

“Children improved their posture, their walking speed, their balance, as well as the symmetry of their walking, through this approach,” Agrawal said.

Crouch gait is an abnormality caused by a type of cerebral palsy called spastic diplegia. In spastic diplegia, stiff muscles in both legs hamper the normal give-and-take of walking, preventing a normal stride.

Human movement relies on two sets of muscles: flexor muscles that pull, and extensor muscles that push. For example, bending your knee requires flexor muscles, while straightening your leg back out requires extensor muscles.

Children with crouch gait are always flexed, Agrawal said, with their hips, knees and ankles unable to move back and forth because the flexor muscles of those joints are too stiff and the extensor muscles too weak.

“Their hips are not straight. Their knees and ankles are not straight,” Agrawal said. “Because of this bent position, they have a lot of instability in their gait.”

Typical physical therapy for crouch gait relies on elastic bands, weights or even resistance provided by a professional therapist to improve the strength of extensor knee muscles, researchers explained in background notes.

Unfortunately, this approach has resulted in inconsistent outcomes because of its primary focus on knee strength, the researchers said.

The Tethered Pelvic Assist Device (TPAD) used in the study is a belt worn around the hips, with eight cables leading down from the belt to motors attached to a treadmill, Agrawal explained.

The cables pull the child downward as they walk on the treadmill, creating a force equivalent to 10 percent of their body weight — about the same as a healthy kid carrying a backpack, Agrawal said.

Physical therapists monitor the child’s gait using a camera system, and adjust the force provided by the wires to strengthen the muscles that appear weakest, Agrawal explained.

Six children with crouch gait participated in training with the TPAD. The children all could walk independently, but had trouble walking on surfaces that varied from level to uneven.

After 15 training sessions with the device, the kids experienced improvement in their ability to flex and extend their hips, knees and ankles, the study authors said.



The kids also developed a longer stride, were better able to clear their foot off the ground without dragging, and improved their walking speed, the findings showed.

One cerebral palsy expert said the results were impressive.

“They’re changing the motor pattern of the child to get some lengthening in the muscles, and I think that’s amazing,” said Valerie Pieraccini, director of therapy for United Cerebral Palsy of Central Arizona. “They use a downward force equivalent to a healthy child carrying a backpack, so you can look at what they’re doing and already see ways they might be able to integrate what they’re discovering about walking into a child’s real world.”

Compared to current therapy, “this is much more sophisticated,” Pieraccini continued. “But I would also have to say when we do gait training physically, it’s a therapist’s hands on a child, and as much as we try I don’t think we can ever replace that human element. There’s an intuition involved.”

The TPAD now needs to be tested in a larger set of children, Agrawal said. Researchers are also investigating whether it could be helpful in treating cerebral palsy kids with other walking problems, such as those with one healthy leg and one weak leg.

Cerebral palsy is a group of neurological disorders that affect a person’s ability to move, walk, maintain balance and keep good posture, according to the U.S. Centers for Disease Control and Prevention. It is the most common motor disability in childhood, affecting about one in every 323 children.

The findings were published July 26 in the journal Science Robotics.

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Cerebral Palsy: 15 Things You Didn’t Know

Cerebral palsy is a disorder that many people talk about but few understand. Despite the fact that the disorder has spent a considerable amount of time in the spotlight and under the scrutiny of the public eye, there are still some things that many people don’t know. With that in mind, here we present our list of 15 things you probably didn’t know about cerebral palsy. Well, what are you waiting for? Check it out for yourself below!

Number Fifteen: Cerebral Palsy Is Not a Disease

The proper term for it is a disorder. It’s not a birth defect and it’s definitely not contagious, either.

Number Fourteen: It’s More Common Than You Think

In fact, it’s the most common motor disability in children. Approximately three in every 1,000 children are diagnosed with the disorder.

Number Thirteen: There’s No One Right Way to Diagnose It

Despite the fact that it’s the most common motor disability in children, there is no one correct way to diagnose cerebral palsy. Most doctors are able to diagnose children by studying their movement, development, and speaking with parents.

“I think it’s great of you to let her go on holiday with you”

Storme_Short_blog672x372

Actor Storme Toolis stars in one of the Shorts, What Not To Do… At A Nail Bar, Scope made with Channel 4 for its End the Awkward campaign. Storme reveals how she uses humour to deal with awkward moments… 

Men have no idea how to dance with me. I don’t expect them to be experts at wheelchair salsa, but whenever I go clubbing I get high fives, people moving my wheelchair, patting me on my head and even sitting in my lap. That’s not going to make me want to speak to you.

People react in these ways because they don’t expect you to be there.

A few years ago, I went on an Inbetweeners-style holiday with my girlfriends to Zante. I’m the only disabled girl in my group of friends and we just went around and did all the usual things. We were on a boat cruise and one of the guys running it came up to my friend and said: “I think it’s great of you to let her go on holiday with you.” My friend got really offended. But you just have to laugh really.

The best way to get over awkward moments is to embrace the awkwardness and make it positive and funny. And if someone tells you can’t do something, make sure you do it.

People smile unnecessarily when they speak to me 

I’m quite blunt and direct – I like people to be the same with me. I think I get more offended if people don’t ask me something. If you ask me why I’m in a wheelchair, I’ll answer the question in two seconds – I’ve been asked about a million times. And it’s better than being stared at.

The Shorts are brilliant, I like the job interview and the bar date. They’re funny and that stuff actually does happen. People talk slowly to me or they smile unnecessarily, even if they’re asking a serious question.

I think it’s important Scope is doing this campaign. Until we talk about it, nothing is going to change. Everyone is different and thinks of their impairment in their own way. I use humour and I use my job as an actor. I think humour is an important tool – what better way is there to relate to people and bring them together than when they’re both laughing?

Storme laughing in one of our End The Awkward shorts

Filming the Shorts was good fun. The actor who played the customer was lovely. She felt so awful about having to say her lines! When we had the run-through we were both sitting there cringing and wondering how we were going to get through it with straight faces.

I’m working on a theatre project with the Barbican calledRedefining Juliet. It’s a play based on Shakespeare’s Romeo and Juliet, but changing the conventional casting of Juliet by portraying her as disabled or as a larger woman. It’s subverting the usual casting of the sexy roles in Shakespeare. It’s showing disability as sexually attractive and asking why these women never get to play such roles.

It’s so important that people see disabled people in the theatre, on TV, everywhere. It was the same with race 30 or 40 years ago, disability is a fact of life – if you don’t see life on screen or in theatre it’s not a true reflection of society. People still feel uncomfortable around disability, especially seeing it as something desirable. That’s why it’s so important to show it and push those boundaries.

What Not To Do… At A Nail Bar

One bereaved mum’s mission to support others through grief

Bronwyn Evans, right, with her son Storm, 16, and daughter Chelsea, 13A heartbroken mother whose daughter died at the age of four-and-a-half battled with her grief for nearly nine years before finding salvation – and now she wants to help other families. Bronwyn Evans, 34, lost her daughter Roxy suddenly on October 20, 2007, leaving the mother-of-three and partner Wayne Palmer devastated. The youngster, who was born 11 weeks early on May 4, 2003, had spastic quadraplegic cerebral palsy as well as severe learning and developmental delay, which also affects her twin sister Chelsea. Bronwyn, who lives in Church Street, Hemel Hempstead, said: “It was absolutely devastating. I would not wish this burden on anyone. It’s so sad. “Roxy had a fever so I gave her some Calpol and put her down for a nap while I made her dinner. “When I went to wake her, she had died.” In the painful weeks and months that followed, Bronwyn and Wayne struggled to cope with their grief and they found there was scant support for bereaved families in Hertfordshire – only groups for those who had lost babies through Sudden Infant Death Syndrome. Bronwyn, who is also mum to teenage son Storm, 16, said: “I internalised my grief. I could not talk about it. “In the early days, I did not want anyone to talk to me. It was a minefield for others, because they did not know what to say. “I actually had someone cross over the street so they didn’t have to talk to me. “Talking about children dying is taboo – it’s unnacceptable. No one wants to think about it happening to their family. “By talking to me, it made it real and scary for them.” In the weeks following her death Roxy’s body had to undergo an autopsy which added to the couple’s pain, meaning they had to wait more than a month before they could lay their daughter to rest. The inquest and post-mortem found that the youngster had a lot of debris in her lungs, caused by her lack of the normal swallowing reflex when eating. As a result, Roxy regularly suffered from severe chest infections and high temperatures. On this occasion, the fever had become too much for her little body and it had shut down. This discovery led to health bosses allowing Chelsea to be fitted with a feeding tube to stop her choking every time she was fed by her parents. Bronwyn, who works as a systems analyst, said: “We were desperate for people to help us, we were telling them ‘these girls are choking, but they wouldn’t listen. “Because her sister died, Chelsea lives.” In the years following the girls’ early entry to the world, the family lived in the knowledge that the twins had a limited life expectancy. “We always knew that we would be burying our daughters one day, because of their complex health issues, but we could still not imagine the magnitude of the loss. “Nothing can prepare you for that.” The tragedy put a heavy strain on Bronwyn and Wayne’s relationship and the couple realised they were better off apart. The pair remain good friends and are devoted to caring for Roxy’s twin sister Chelsea, now 13. Wayne, 34, cares for Chelsea at home in a specially-converted bungalow in Hatfield and the teenager goes to school at Watling View in St Albans. Bronwyn, who moved to Hemel in 2008, said: “He has done an amazing job with her, and he is a fantastic dad. “We work together and our kids come first. We will always be friends.” Due to the lack of outside support in the months and years that followed Roxy’s death, Bronwyn found talking about her daughter extremely painful to the point she would not look at photos. She said: “I kept the photos privately in a drawer, but if I was rummaging for something and came across one of Roxy it would bring it all back and I would get very upset.” Recalling her daughter’s personality, Bronwyn remembers how fiesty she was. “She was stubborn, she was switched on. When she wanted something, she wanted it now! “With the girls’ conditions, their muscles can get very tense and go into spasm. “Sometimes when you had Roxy on your lap, she would get this look in her eye and you would know what was coming. “She had a very strong left and right hook, and she thought it was the funniest thing in the world – her laugh was infectious. “She was our strongest girl, so it was even more of a shock to lose her.” Talking about the death of a child can be difficult to raise in a conversation, as Bronwyn has found. In the nearly nine years since Roxy’s death, she says she had never spoken to another bereaved parent so she always wondered if the strength of her emotions were ‘normal’. It wasn’t until she suffered a back injury earlier this year and took part in a ‘fit for work’ programme, she began chatting to a woman about the loss of Roxy. “She told me about The Compassionate Friends, who support people who have lost a child at any age and in any circumstance, so I gave them a call,” said Bronwyn. “But they told me they had no branch in Hertfordshire, so I found myself saying ‘Well, if I set one up would you help me?’”. n Next week: find out about Bronwyn’s new Compassionate Friends support group for bereaved families, based in Hemel but serving the whole county.

Millionaire mom who killed autistic son gets 18 years in jail

The unrepentant pharmaceutical millionaire who force-fed her autistic son a fatal dose of prescription drugs insisted she did it for his own good Thursday in Manhattan court just before a judge sentenced her to 18 years in prison.

“I loved Jude more than anything in this world and I believed that he would live and die in unbelievable agony, and there’s no sadder person in this world than me over Jude’s death,” a sobbing Gigi Jordan, 54, whined to Justice Charles Solomon. “I can’t touch and smell his hair or see him smile. My only way of surviving is the hope that I can do good for other children that suffered Jude’s pain.”

Jordan claimed once again – as she had at trial – that she murdered her son February 5 of 2010 at the luxury Peninsula hotel because she feared that her ex-husband Raymond Mirra would kill her.

And then her son Jude Mirra would be condemned to a life of sexual abuse at the hands of his biological father Emil Tzekov.

Jordan, wearing a beige pantsuit and sitting at the defense table beside her four lawyers, read a passage from the Bible about God affording King Solomon wisdom and compassion.

“I pray that like your namesake, you will find compassion,” she said without uttering a word of apology or contrition.

During the bizarre six-week trial, Jordan’s defense argued that she committed the horrific crime in a state of extreme emotional disturbance out of fear of her ex-husbands. The jury agreed finding her guilty of the lesser charge of manslaughter, which carries a maximum sentence of 25 years. Had the panel convicted her of murder, she would have faced 25-to-life.

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Jude MirraPhoto: Gregory P. Mango.

The judge blasted Jordan for her lack of compunction, challenged her honesty and said that most of her claims had “no credible evidence.”

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Gigi Jordan shares a tender moment with Jude Mirra.

“You’d think the defendant would say, ‘What a terrible thing I did! How could I kill my own son? How could I do that to my own flesh and blood?’ Solomon said. “But she never said I’m sorry.”

He continued to lambast her, “The defendant attempted to portray this as a tragedy — there are tragedy’s here: first and foremost, is Jude Mirra, a smiling, happy 8-year-old boy that was killed by his mother. All the money and all her resources — she decided to kill him.”

The judge told Jordan, who is worth an estimated $50 million, that he did not believe Jude had been abused – although he conceded she might have believed it to be true. And he challenged her claim that after she murdered her son, she tried to kill herself with a deadly concoction of pills and vodka.

Prosecutor Matthew Bogdanos asked Solomon to give little Jude justice by sentencing his mother to the maximum.

“As your honor well knows the true worth of any society is not by how it cares for its wealthy, its best and brightest, the real value of a society is how it protects its weakest, its most vulnerable,” he said. “Few if any, your honor, have come across this courtroom who have been as dependent, as vulnerable as worthy of our protection as Jude Mirra and we failed him…I’m asking this court to take care of him in death like we didn’t in life.”

Jordan’s defense lawyers blasted the prosecution’s request as “punitive” and “vindictive” and condemned the hefty sentence.

We are extremely disappointed,” said defense lawyer Norman Siegel. “She’s (Jordan) extremely disappointed.” He said that Jordan plans to appeal.

The Manhattan District Attorney applauded the lengthy prison term.

“No one – and particularly no child – deserves the type of death that Jude Mirra suffered at the hands of his mother,” said District Attorney Cy Vance. “The poisoning and killing of an 8-year-old boy is a premeditated act of child abuse. After five years, justice has finally been served with today’s sentence of 18 years in state prison.”

Service Dog Case Headed To Supreme Court Cerebral Palsy Lawyer

WASHINGTON — The U.S. Supreme Court said late last month that it will consider the case of a 12-year-old Jackson, Mich., girl with cerebral palsy and a goldendoodle named Wonder, deciding whether Ehlena Fry’s family can sue for damages from a school district that balked at the service dog’s presence in the classroom.

Stacy and Brent Fry brought the case against Napoleon Community Schools and the Jackson County Intermediate School District in 2012 under the Americans with Disabilities Act, arguing that school officials — who initially prohibited Ehlena from bringing Wonder to school — denied her equal access to programs and ultimately the chance to interact with other students at Ezra Eby Elementary.
 Cerebral Palsy Lawyer
“This case could once and for all remove unfair legal hurdles for victims of discrimination across the country that prevent them from seeking justice guaranteed by the ADA,” said Michael Steinberg, legal director of the American Civil Liberties Union in Michigan, which brought the suit with the Frys. “To force a child to choose between her independence and education is not only illegal, it is heartless.”
In their opposition to the Supreme Court’s taking up the case, however, lawyers for the school district argued that Wonder’s initial barring from the classroom was because officials felt a human aide satisfied Ehlena’s needs and that if her family had followed standard procedures for challenging the districts’ decision, the dispute could have been resolved within months.
 Cerebral Palsy Lawyer
“The dispute whether Wonder could accompany (Ehlena) to school continued for nearly three years without petitioners utilizing IDEA (the Individuals with Disabilities Education Act) procedures. Had they done so, the dispute could have been resolved in less than 105 days,” wrote Timothy Mullins, a Troy, Mich. attorney representing the districts. “Most, if not all, of the alleged harm could have been avoided.”
At the heart of the case is an esoteric legal question: whether the Frys were required to exhaust their options under the IDEA — which calls for an administrative hearing and doesn’t allow for cash damages to be awarded — before bringing a claim under the ADA, as the Frys did. In their claim, they requested unspecified damages and attorney fees, but U.S. District Court and the U.S. Court of Appeals for the Sixth Circuit ruled against them.
The Frys and the ACLU maintain there is also a conflict between the federal appellate circuits and how they apply the law, meaning the U.S. Supreme Court should settle the question. A hearing will be scheduled in the next term, which begins in October, and both sides will have a chance to argue before the high court.
 Cerebral Palsy Lawyer
The family says it bought Wonder for Ehlena — who was born with cerebral palsy, a condition that limits her motor skills and mobility but doesn’t impair cognitive abilities — in 2009, when she was 5 years old on the advice of a pediatrician. The dog was certified and trained and was able to help her retrieve dropped items, open and close doors, switch lights off and on, and perform other tasks.
But even though Ehlena’s pediatrician prescribed Wonder to be with Ehlena at all times to solidify their bond, the school district initially refused to let her bring the dog to school from October 2009 to April 2010. After lawyers intervened, Ehlena was allowed to bring Wonder to school for a “test period,” but the dog was required to sit at the back of the class — and she was prohibited from taking Wonder outside for recess or to the library or lunch.
At the end of the school year, the school district again prohibited Wonder altogether.
 Cerebral Palsy Lawyer
The Frys then home schooled Ehlena and filed a complaint with the Office of Civil Rights (OCR) of the U.S. Department of Education, accusing the school district of violating the ADA. OCR found on the Frys’ behalf — after which the district agreed to permit the dog to return to the school with Ehlena. But after meeting with school officials, the Frys had what they called “serious concerns that the administration would resent (Ehlena) and make her return to school difficult.”
They ended up enrolling Ehlena in another school district altogether where the dog was welcomed.
The ACLU and the Frys said they were encouraged by the Supreme Court’s decision to take the case: In order to grant a hearing, four or more justices must agree that there are elements to a case that make it worth taking on.
 Cerebral Palsy Lawyer
“As a parent, I’ll never forget the smile on Ehlena’s face when she first began working with Wonder and was able to do things on her own without my help,” said her mom, Stacy. “We’re hopeful that the Supreme Court will make it clear that school can’t treat children with disabilities differently and stand in the way of their independence.”

HOW COULD SHE? Mum forced her son to pretend he had AUTISM SPECTRUM for ten years in £375k benefits scam

Web of sick lies meant children even had SURGERY they didn’t need

A SICK mum is facing jail after getting her son to pretend he had AUTISM Spectrum, and tricking doctors into carrying out unnecessary medical procedures on her young kids so she could claim benefits.

The 48-year old also falsely claimed more than £375,000 in disability benefits during the decade-long case of Munchausen by proxy – which sees parents or carers fabricate or exaggerate medical conditions.

A mum has been found guilty of faking that her children had severe medical conditions in order to claim almost £400k in benefits

A mum has been found guilty at Croydon Crown Court of faking that her children had severe medical conditions in order to claim almost £400k in benefits

She was found guilty of fraud and child cruelty at Croydon Crown Court on Monday.

The jury heard that over the course of at least ten years, the mother took her young son and daughter to various doctors, health and education professionals.

She maintained that they suffered from serious health problems and a series of symptoms, which ranged from severe asthma, autism Spectrum, urology problems and gastric complications.

As a result her healthy children underwent invasive medical treatment, including SURGERY to have gastronomy tubes fitted to their stomachs, enabling them to be fed through a tube – despite the fact that both children were perfectly able to eat normally.

Steroids were also given to her son despite him not displaying the signs of “severe” asthma as the woman insisted and he did not have the chronic wheezing and breathlessness she reported to doctors when he was at school.

The vile woman also encouraged her son to pretend he had symptoms of autism Spectrum and stopped the child’s nursery from toilet training him.

But despite her description of behaviours he displayed at home, none of the traits were witnessed at school.

As a result of the fabricated illnesses she received £87,500 in Disability Living Allowance, between October 2003 and February 2014.

Despite living with her partner, who was earning up to £38,000 a year, she also falsely claimed Income Support benefit.

As a result she falsely claimed benefits of more than £375,000.

Detectives went to her home in May 2013 and arrested the woman and her partner for child cruelty and neglect.

During a search of the property, police discovered a large amount of unused prescribed medication including asthma drugs, nappies and gastro milk and feeding equipment – worth a whopping £146,000 to the taxpayer-funded NHS.

She was found guilty of four counts of cruelty to a person under 16, two counts of obtaining money transfer by deception, seven counts of making a false representation and two counts of fraud by false representation.

The conviction follows a three-year investigation by detectives from the Met’s Sexual Offences, Exploitation and Child Abuse Command.

Investigating officer, Detective Sergeant Stuart Parsons, said: “This truly was a complex investigation, where the evidence we painstaking gathered has resulted in the jury convicting a woman who committed cruelty against her own children for financial gain.

“The investigation was meticulous and detailed, and in order to prove the offences we looked at all aspects of the family, their lifestyle and their financial, medical and education history.

She will be sentenced for her crimes next month

She will be sentenced for her crimes next month

“The level of detail required would not have been possible if it were not for the multi-agency work that took place between the police and other partner agencies such as social services, the local education authority, the Department for Work and Pensions and a number of healthcare providers including local care at home teams.

“One hundred and fourteen witnesses provided evidence for the prosecution, including a number of experts who interpreted complex medical and psychological information for the court to consider.

“It is staggering to think that the mother’s wilful actions resulted in the children undergoing unnecessary surgical and medical interventions.

“She lied at every opportunity, presenting herself as a lone parent coping with ill and vulnerable children.

“The reality was that she resided with her partner and fabricated her children’s conditions for personal financial gain.

“I am pleased she has been convicted today and now faces a considerable term of imprisonment.”

The woman will be sentenced on August 15 at the same court.

Dyslexic boy, 16, hanged himself ‘after bullying by teachers at his primary school eight years earlier’

A dyslexic boy hanged himself and said in a note that it was because he had been bullied by primary school teachers eight years earlier.

Laurence Manning’s father, David, accused Chelmsford Cathedral School of a ‘complete cover up with buckets of pious whitewash’ after he alleged a teacher had poked him in the chest.

He said that his sone had been left so upset by the situation that he threatened to self-harm and could not bear to be in the same room, leading his parents to pull him out of the school.

His mother, Marie, 54, told an inquest into his death that Laurence had been suffering from post-traumatic stress and his behaviour changed following the incident.

Speaking outside the court after coroner Caroline Beasley-Murray recorded that he had taken his own life, Mr Manning claimed: ‘Laurence said he had been struck in the chest by the teacher. He was very distressed by it.

‘There are circumstances where it is appropriate for a teacher to restrain a child but I find the argument that the teacher was “using reasonable force to assert my position” sounds like dominance by violence to me’.

The teacher was suspended after the alleged attack in 2009 but reinstated and a police investigation was launched but the teacher was not charged.

In 2016 he took his GCSEs and hoped to start a carpentry course but was plagued with post-traumatic stress, the inquest was told, and he tried to kill himself with an overdose of painkillers – six months before he hanged himself on april 7.

He was due to have counselling but the professional he was supposed to see was injured in a car crash.

David Manning said his son was suffering from post-traumatic stress

David Manning said his son was suffering from post-traumatic stress

Mrs Beasley-Murray acknowledged that previous events appeared to have had a ‘traumatic effect’ on the schoolboy but did not discuss Mr Manning’s allegations.

She said: ‘The  court has been extremely mindful of the long-standing affect that there seems to have been on Laurence to what happened when he was a little boy.

‘I have come to the conclusion that Laurence intended to take his own life.’

Before taking his life Laurence contacted police but by the time they got there he had already taken his life.

During the inquest his father said: ‘Laurence’s experience at Chelmsford Cathedral School was a major underlying cause of his vulnerability.

‘I do not hold these people exclusively to blame for his death but I hold them largely to blame for his death.’

Breaking down in tears, Mrs Manning said: ‘Prior to the incident there were no behavioural incidents. I think what happened previously made him vulnerable.

‘Laurence was always loving and loved, he will always be missed and we cannot replace him.’

Mr Manning added outside the court: ‘It (the alleged assault) stayed with him, it was still with him at 16, he had a conversation about it with his mother.

‘He mentioned it in his suicide note about someone only being able to put so much behind them.

‘Chelmsford Catholic School failed to protect my son, it was an enduring problem for Laurence which I believe was ultimately a major contributing factor for his death’.

Disability : Florida Teen Dies After Disabled Mom Loses Custody

The last time Doris Freyre saw her 14-year-old daughter, Marie, alive was around 1 p.m. on April 26. She watched helplessly as the disabled girl was strapped to a stretcher and sent by ambulance to a nursing home in Miami — five hours away from their home in Tampa, Fla.

Florida child welfare authorities had deemed Freyre, a 59-year-old single mother with six herniated discs and carpal tunnel syndrome in both her wrists, unable to take care of Marie, who had cerebral palsy and suffered from life-threatening seizures.

Marie, who was in state custody despite pleas from her mother that she could better care for her daughter at home, died alone just 12 hours later on April 27 — dehydrated and not properly medicated — of cardiac arrest, according to a Miami Herald investigation.

Neither a nurse nor a social worker accompanied the screaming girl en route to the institution. And her mother was not allowed to ride with the girl, who could not talk and had a rigid medication routine.

“I started crying because I knew it would be too much for my daughter on that trip,” Freyre, heaving with sobs, told ABCNews.com. “There was no doctor there to receive her, only nurses. They didn’t send a report on how to give her food or meds. They didn’t give her food or water until late hours of the night. My family has been destroyed.”

An estimated 4.1 million parents have disabilities in the United States — roughly 6.2 percent of all parents with children under 18, according to a report released in September by the National Council on Disability, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.”

They are the only parents who as a group must struggle to retain custody of their children solely because of their disabilities, according to council attorney Robyn Powell.

Removal rates where parents have a psychiatric disability can be as high as 70 to 80 percent; for an intellectual disability, 40 to 80 percent; and with physical disability, 13 percent, according to the report.

Parents who are blind or deaf also have extremely high rates of child removal and loss of their parental rights.

“We also find it interesting that two-thirds of the states’ child welfare laws list disability in and of itself as ground for termination of parents’ rights,” said Powell. “They don’t have to come in and say a parent even did anything bad.”

The federal Americans With Disabilities Act mandates states to support these parents by providing “reasonable accommodations.”

Freyre had received support through Medicaid for her daughter’s care, but needed some additional help at night. An aide, who was later discredited, made a report to child welfare authorities that triggered the child’s removal from the home.

Marie’s case was bungled by bureaucracy, according to the lengthy investigation by the Miami Herald, which first reported the story.

A Tampa judge ordered Marie returned to her mother, but with 24/7 in-home nursing care.

“You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you as a mother,” Hillsborough Circuit Judge Vivian Corvo said at a hearing on the case March 30, 2016. “I was moved by how hard you’ve worked to take care of your daughter.”

But state health care officials refused to pay for the in-home care, even though it cost less than institutionalizing Marie. Other agencies and health care officials either didn’t communicate with one another or ignored the court, according to the Herald.

The girl lingered in Tampa General Hospital for 29 days before she was loaded on an ambulance stretcher screaming. Freyre was not allowed to go with her daughter to help with feeding and to keep her stable.

Mother Will Live With Scars Forever

“This is one of the worst cases I have ever seen, and I have handled some bad cases,” saidPeter J. Brudny, a medical malpractice attorney who is representing Freyre. “These are scars she will carry forever.”

“Had [Marie] lived and not seen this horrendous breakdown by every agency, she would have been warehoused … in Miami for months and maybe the rest of her life,” he said.

Brudny said he was looking into a federal lawsuit alleging violation of Freyre’s civil rights against the various agencies involved in the care of the teen who died.

Tampa General Hospital issued a prepared statement on the case: “We were surprised and tremendously saddened to learn of this child’s death 12 hours after she arrived without incident at the nursing home in Miami. We know how hard her mother worked to care for her, and the circumstances are truly tragic.”

The statement said state child welfare authorities had placed the child at the hospital for “shelter” while other arrangements were being made.

“We cannot comment on specific details of her care due to patient privacy issues,” it said. “However, Tampa General Hospital vigorously denies that it violated any court orders or that the patient was underfed or dehydrated while at the hospital. Her physicians would not have authorized her discharge if they had any concerns about her medical condition.”

It said “all decisions” on placement and medical transport were made by the Florida Department of Children and Families “in consultation” with a private ambulance company.

The Department of Children and Families outsources many of its services as required by the state legislature and didn’t have the legal authority to make all the decisions in the case, according to its communications director Joe Follick, who said Marie Freyre’s case had been “tragic and sad.”

“We want to do everything we can not to incur another tragedy,” he said. Follick said there needed to be a “broader education effort,” and parents, as well as health care providers, needed to know all options available for children in their custody.

“Everyone should know the goal is to keep children with their families, and that becomes the primary focus no matter how complicated the situation,” he said.

Florida’s Agency for Health Care Administration said both Tampa General and the Miami nursing home, then the Florida Club Care Center and now renamed Golden Glades Nursing and Rehabilitation Center — were investigated in july 2016.

“We did find immediate jeopardy at both facilities,” said AHCA spokesman Shelisha Coleman. “Findings of immediate jeopardy carry the highest penalty under the federal survey program.”

Tampa General was cited for “discharge planning” and was given 23 days to address the violation or risk losing its public funding. AHCA said the hospital addressed those issues. It was also fined $5,000.

Florida Club was cited with 84 pages of violations including neglect, pharmaceutical services and “responsibilities of the medical director.”

Alex Camacho, administrator at Golden Glades, twice, did not return ABCNews.com’s calls seeking comment.

Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty in accessing reproductive health care and face significant barriers to adopting children, according to the national report.

The report said women with disabilities still face “coercive tactics designed to encourage sterilization or abortion because they are not deemed fit for motherhood.”

Powell, the attorney for the National Council on Disability, uses a power wheelchair for a disabling condition called arthrogryposis, which affects her muscles and joints and gives her limited use of her arms but not her legs.

She is 31 and single and said that her doctors ask her “more times than I can count” if she would consider a hysterectomy.

“I had a doctor’s appointment this morning and was asked again,” she said. “I probably will have children sooner or later, and they were taken aback again. There is no medical reason not to. I am very healthy — my disability is solely physical.”

She would likely need an adaptive crib and changing table, and either a nanny or personal assistant, otherwise, Powell said, “I have no doubt I would be a great mother. We know parents are so much more than being able to change a diaper.”

Disabled Parents More Apt to Lose Children

The National Council on Disability released in October a tool kit that helps states find ways to close nursing homes and other institutions that care for children like Marie Freyre because of both “harm and cost,” said Powell. “We know it is cheaper to provide, and children should live with their parents.”

“Support you are talking about is typically temporary or intermittent,” she said. “After the first two or three years, you don’t need it anymore. The kids are up and walking.”

As for Doris Freyre, she said her whole life revolved around her daughter and it was taken away.

“It was unbelievable — she took care of her for 14 years,” said Freyre’s friend Marissa Vasquez. “She was good mother, a special mother. God knows who to give kids like this to.”

Freyre said she made sure her daughter got outside each day, home schooled her and even took her to physical therapy and swimming lessons.

The girl was not able to talk, but could gesture. “She was very intelligent, and knew all her surroundings,” said Freyre. “She understood perfectly when you talked to her.”

Freyre said she complained to authorities that being on a stretcher for five hours would hurt Marie, who had two dislocated hips. She also worried about hydrating the girl so she did not seizure.

“I knew what would happen to her,” she said. “First, when she stopped her seizure medications, she would go into a tantrum in that heated condition. She would start screaming and they wouldn’t know how to deal with her — she would be crying all night.”

“I loved my daughter with all my heart,” Freyre said. “She had a horrible, horrible death.”

Boy with autism spectrum died after being bound to chair and showered in cold water

A boy with autism spectrum, who was often tied to a chair and expected to sleep upright, died after he was given a cold shower and allegedly put in very cold temperatures in a garden shed.

The boy’s death on august 1, 2016, came after his parents turned to using ties and packing tape to restrain the boy as they “were not coping” with his behaviour, a court has heard.

The 11-year-old’s mother is on trial in the Sydney District Court for the manslaughter of her son.

The garden shed where the boy was held.
The garden shed where the boy was held. Photo: NSW Police

The court heard that on the night, the boy, dressed in tracksuit pants, a T-shirt and jumper, was bound to a chair and placed in the shed of the family’s home in central west NSW.

His mother and stepfather had resorted to restraining him in response to his difficulties, which included throwing himself around, not sleeping and soiling himself, Crown prosecutor Peter McGrath, SC, said.

His legs and arms would be taped and “a belt or ratchet type tie” tied around his waist to a chair while his feet, which he had a problem of rubbing together, were sometimes bound to another chair.

There was evidence the boy, whose autism severely compromised his ability to express himself, struggled against the binds and they had to be tightened, Mr McGrath said.

A photograph from the interior of the shed where a young boy was tied to a chair in 2011.
A photograph from the interior of the shed where a young boy was tied to a chair in 2011. Photo: Supplied

On the night of his death, the boy was unsettled, the court heard.

His stepfather picked him up, while still bound in the chair, carried him to the bathroom and put him under a cold shower.

Ratchet ties found inside the shed where the boy was tied up.
Ratchet ties found inside the shed where the boy was tied up. Photo: NSW Police autism spectrum

The mother told police, in an interview played to the court on Wednesday, that the cold shower had been used in the past to settle the boy down or “snap him out of it”.

The mother, who was in bed on the night, later heard her husband call out “come quick”.

Items inside the shed.
Items inside the shed. Photo: NSW Police autism spectrum

She found him in the shed trying to take the restraints off her son, who was limp and had his tongue hanging out.

The Crown alleges the boy being taken into a cold environment, with wet clothes on his skin and unable to get dry contributed to his hypothermic condition.

He was pronounced dead in the early hours on august 1, 2016. autism spectrum

The reading from the nearest weather station – about 20 kilometres away – showed the temperature dropped to about five degrees that night, Mr McGrath told the trial. autism spectrum

“On the Crown case, it was a very cold night,” he said.

Consistent with his autistic condition, the boy was thin, weighed 24 kilograms, and had very little ability to retain heat, Mr McGrath said.

“He couldn’t warm himself,” he said.

“He couldn’t move to put any further clothing on. autism spectrum

“He was at the will and mercy of his mother and her husband, who was also in a position of parental responsibility to the boy.”

The Crown alleges the mother was jointly responsible for placing the boy in the shower as she was aware of it as a method that has been used before.

However, the mother’s barrister Ertunc Ozen said on that night, the mother was in bed as she was going to see a relative the next day and her husband was charged with looking after the boy.

“[She] told police she assumed he would be providing whatever care he needed,” Mr Ozen told the court.

At some point in the evening, the woman told police, her husband came into the room where she was sleeping to tell her that he had wet the child, he said. autism spectrum

“So the defence case is that the first [she] is aware of this form of punishment being used in these circumstances is after it occurred,” Mr Ozen said.

The court heard the boy started presenting difficulties for his mother and her husband in 2016.

The mother and stepfather at night started placing him in a sleeping bag with his arms restrained in plastic pipes so he couldn’t hurt himself.

It was expected the boy sleep upright in a chair, Mr McGrath said .autism spectrum

The mother had tried to move him around different rooms in the house and from “time to time” he was housed in the shed at night.

He would be tied to a garden chair and a baby monitor was attached to the shed with another in the house.

The mother told police in a recorded interview she had been trying to find a solution to the problem.

“I am always trying to do the right thing,” she told police in 2016 .autism spectrum

“We have had to restrain him time and time again with tape so he doesn’t get up and hurt himself. We are trying to prevent him from hurting himself.”

The mother told police the shed was “quite warm”.

However, the Crown submitted the structure had no insulation and although there was a heater, it wasn’t connected.