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.

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.”

15 Things You Didn’t Know Cerebral Palsy (Famous Personalities With Disability And 5 Possible Cause )

Cerebral Palsy: 15 Things You Didn’t Know

Any issue in Dictionary Please Forget I am New And Share Information 🙂

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.

Number Twelve: There Are Several Different Kinds

Most people think CP is one disorder; however, it’s actually a group of varying disorders. The most common kind of cerebral palsy is spastic CP, which involves the muscles being particularly stiff. Other types include ataxic CP, which causes problems related to coordination, and athetoid CP, which causes either slow movements or fast and jerky movements.

Number Eleven: It’s on a Continuum

Not every child diagnosed with the disorder will experience it to the same degree. While some people who have the disorder can walk perfectly fine and have perfect speech, others are confined to wheelchairs and struggle to form a single word.

Number Ten: It Affects All Muscle Groups

Most people might not think about this, but cerebral palsy can affect a person’s ability to swallow. All muscles related to motor control can be affected by the disorder.

Number Nine: It Can Change Over Time

Even if a child is diagnosed with the disorder, the disorder itself isn’t immutable. The severity often changes as a child grows – it can either improve or worsen. The disorder also changes depending on weather and mood.

Number Eight: There’s No Cure

Despite its prevalence, there is no known cure for CP. Very little research has been done, and this is likely due to funding issues.

Number Seven: It Doesn’t Affect a Child’s Personality

Many people might see a child with CP and assume his or her personality has been subdued because of it. However, this isn’t the case at all! Children with CP have vibrant personalities – it’s only their physical exterior that has been disabled.

Number Six: People With CP Don’t Want a Pity Party

It’s easy to look at a young child with CP and feel sorry, but parents of children with CP would rather you take that pity party elsewhere. Kids with cerebral palsy face marked challenges, yes, but it’s a part of who they are and helps them build character

Number Five: It Can Take Years to Diagnose

This is quite exceptional, but some people don’t know they have cerebral palsy until they’re as old as 13. However, if a 13-year-old has it and doesn’t know it, chances are he or she is on the low end of the symptom spectrum.

Number Four: It’s a Sexist Disorder

More males are diagnosed with the disorder than females, and to quite a significant degree. For every 100 females diagnosed, 135 males are diagnosed.

Number Three: Many People With CP Were Born Prematurely

It’s no secret that babies born prematurely are vulnerable to a host of extra issues, but this is quite shocking. Incredibly, half of all people diagnosed with the disorder were born prematurely.

Number Two: More People Are Being Diagnosed Every Day

This is sad but true. Every year, more and more people are diagnosed with the often debilitating disorder. More and more treatments are being developed every year to combat the disorder as well.

Number One: People With CP Are Generally Really Smart

An impressive 60 percent of people with CP have normal or above average intelligence. We hope you enjoyed our list of 15 things you didn’t know about cerebral palsy!

Cerebral Palsy: 7 Famous People Who Have It

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Cerebral palsy is a disorder that affects the muscles, motion, and motor skills. The disorder is most commonly caused by brain damage. CP affects about three out of every 1000 births, and at this time, there is no known cure. The effects range from a mild limp to severe speech and movement issues. Here are some famous people with CP.

Number Seven: Josh Blue

Josh Blue is a stand-up comic from the USA. The star uses his self-deprecating humor, and challenges people to get over pre-conceived notions about people with CP.

 

Number Six: Abbey Nicole Curran

Curran made history when she became the very first Miss USA participant with a disability in ’08. She also started something called the Miss You Can Do It Pageant for girls with special needs, using her status to give back and help others.

 

Number Five: Bonner Paddock and Cerebral Palsy

Bonner Paddock wasn’t diagnosed until he was 11 years old, and up until then, played sports as if he didn’t even possess physical limitations. This impressive man was the first person with cerebral palsy to reach the summit of Mt. Kilimanjaro without help.

 

Number Four: Dan Keplinger

This man is an artist, as well as a motivational speaker. He developed the disability due to complications with his birth. His artwork has been shown in a few different galleries across America.

 

Number Three: Geri Jewell

Geri Jewell is an actress, comic, writer, and public speaker who has won national recognition. This was for being the first individual with cerebral palsy to be cast in a TV series.

 

Number Two: Christy Brown

This impressive man was a painter, poet and author born in Ireland. He had a severe case of palsy. With the help of his mom, he eventually learned how to read, write, and talk. He wrote an autobiography and had a film made about him.

 

Number One: RJ Mitte

We all know this guy from Breaking Bad. His career with acting began in 2006 when he moved to LA. Here, he started working with a talent agent with hopes of spreading awareness about CP. Thanks for reading our list, and we hope you enjoyed it.

Cerebral Palsy: Top 5 Possible Causes of the Disorder

Cerebral palsy is a general title used to define a group of chronic disorders. These “palsies” inhibit a person’s control over their own movement as a result of brain damage. This typically happens as the brain is still developing. Cerebral palsy typically develops and becomes apparent by toddlerhood. This is a nonprogressivedisorder, which means that the damage present in the brain does not get worse as the person grows older. Regardless of this, the symptoms associated with the damage have a tendency to change as time progresses. At times, they get better, and others they get worse. It’s one of the more common causes of disabilities in children. Here are some of the five common causes of this disorder.

Number Five: A Mother Experiencing Infection During Pregnancy

An expecting mother having an infection while she is pregnant increases the risk for damage to the child’s unformed nervous system. This could be anything from rubella to cytomegalovirus (similar to the herpes virus) or infections caused by parasites. Unfortunately, many of these types of infections go undetected.

Number Four: Infant Jaundice Can Cause Cerebral Palsy

Jaundice is a sickness that is caused by an overabundance of bilirubin in the bloodstream. The job of the liver is to filter this out. Many times, infants’ livers do not do this effectively right from birth, making jaundice quite common for newborns in the days after birth. In the majority of cases, a specific type of light therapy will clear this up, leaving no detrimental effects. In rare or untreated cases, however, this sickness can cause damage to the brain.

Number Three: Rh Incompatibility

Sometimes, a new mother and her baby share differing Rh types, leading the mother’s body to attempt to destroy the developing fetus’s blood cells. This can lead to a type of jaundice and in serious cases damage to the brain and CP.

Number Two: Traumatic Birth

Some births are physically and metabolically traumatizing for the baby, at times including head trauma. This can lead to damage to the brain of the fetus.

Number One: Oxygen Deprivation

Oxygen deprivation is possible during labor, which can cause cerebral palsy. Thanks for reading.

You Like This Post Please Like This Page Cerebral Palsy Support

What I Want You To Know About My Children With Special Needs

When I look at all the paperwork from doctors and therapists (that I try and keep track of but somehow never really get under control) I can see it’s a lot.

When we have a tough day, when both boys are exhibiting the more difficult signs and symptoms of their diagnoses, I know it’s a lot.

I do my best to explain it, so you know what the heck is happening with my children and their ever-evolving list of medical needs.

But apparently, all the diagnoses up in here are getting a little confusing.
For the record, my oldest son is 13 years old. He is on the autism spectrum, has an anxiety disorder diagnosis and two autoimmune diagnosis – Sjogrens Syndrome and Lupus.

 

My youngest is 10. He is profoundly dyslexic, has a processing delay and anxiety disorder, and is also in the process of being further evaluated for neurological and/or mood disorders.

 

Yes, it’s a lot to keep track of.
But it is no where near enough information about these two.
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I want you to know they are so freaking smart and funny.
I want you to know my oldest says he loves me now, sometimes, and means it. I wasn’t sure that was possible a few years ago.
I want you to know that no one snuggles better than my youngest, and that he just read me an entire chapter. A year ago he struggled to read the word “the”.
They both love their friends and love seeing them.
I want you to know they are young men – they are people first.
I want you to know that they are loved more than I ever thought possible by a mom that messes up more than I ever thought possible.  I want you to know that by the grace of God, she keeps it together enough to keep going, to make progress, to live life.
I want you to know that my sons see the looks, the disapproval, the judgement. They are old enough now to perceive it, and it hurts.
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I want you to know that the basics we take for grated are difficult feats for these kids. Things like showering, sleeping, eating and socializing – they all require more effort than seems fair.
I want you to know that nothing stops my boys. Not physical pain. Not emotional torment. Not the darkness of depression nor the accusation of anxiety. Not overwhelming fatigue or irrational fears.
They are the bravest two people I have ever met, with or without diagnoses.
I just wanted you to know.

Disabled woman beaten bloody by TSA agents after becoming confused and afraid at security checkpoint

isabled woman was beaten bloody by federal agents during an airport security screening while on her way to undergo treatment for a brain tumor.

Hannah Cohen set off the metal detector at a security checkpoint at the Memphis International Airport, and she was led away for additional screening, reported WREG-TV.

“They wanted to do further scanning, (but) she was reluctant — she didn’t understand what they were about to do,” said her mother, Shirley Cohen.

Cohen said she tried to tell agents with the Transportation Security Administration that her 19-year-old daughter is partially deaf, blind in one eye, paralyzed and easily confused — but she said police kept her away from the security agents.

The confused and terrified young woman tried to run away, her mother said, and agents violently took her to the ground.

“She’s trying to get away from them, but in the next instant, one of them had her down on the ground and hit her head on the floor,” Cohen said. “There was blood everywhere.”

The young woman, who was returning home after finishing treatment for the brain tumor at St. Jude Hospital, was arrested and booked into jail.

Authorities eventually threw out the charges against Hannah Cohen, but her family has filed a lawsuit against Memphis police, airport police and the TSA.

Neither police department commented on the suit, but a spokesperson for the TSA said passengers should notify agents ahead of time if they have special needs.

“Passengers can call ahead of time to learn more about the screening process for their particular needs or medical situation,” said TSA spokesperson Sari Koshetz.

Watch this video report posted online by WREG-TV:

Disabled St. Jude patient sues airport and TSA after bloody scuffle with Airport Police

Watch this video report posted online by WREG-TV:

MEMPHIS, Tenn. — Bloodied and bruised Hannah Cohen was led from Memphis International Airport in handcuffs.

The 19-year old was headed home to Chattanooga after treatment for a brain tumor at St. Jude Hospital June 30, 2015.

It’s a trip they’ve made for 17 years.

This time, an unarmed Hannah, set off the metal detector at a security checkpoint

“They wanted to do further scanning, she was reluctant, she didn’t understand what they were about to do,” said her mother Shirley Cohen.

Cohen told us she tried to tell TSA agents her daughter is partially deaf, blind in one eye, paralyzed, and easily confused, but said she was kept at a distance by police.

“She’s trying to get away from them but in the next instant, one of them had her down on the ground and hit her head on the floor. There was blood everywhere,” said Cohen.

Hannah was arrested, booked and on the night she should have been celebrating the end of her treatment, she was locked up in Jail East.

“Here we were with nowhere to go, not even a toothbrush, our bags had gone to Chattanooga,” said Cohen.

Authorities later threw out the charges but the family filed a lawsuit against the Memphis Airport, Airport Police, and the Transportation Security Administration.

None of them would comment citing the suit, but Sari Koshetz of TSA released a statement that said, “Passengers can call ahead of time to learn more about the screening process for their particular needs or medical situation.”

Cohen said after all the help here, she can’t believe it ended like this.

“She’s 19 but she’ll always be my baby. We’ve been through so much.”lawsuitagainst-tsa