Mum’s appeal to help girl with brain condition
TO look at, Gypsy Mae Chamberlain looks like any other healthy, happy 12-year-old girl.
But since she was born she has been living with a brain condition so rare that only a handful people have it globally.
It has had such a severe impact on her life that she cannot go to school, has had countless stays in hospital and more chemotherapy sessions than most cancer patients.
Despite all she’s been through, her mum Chantelle Chamberalin says her wonderful daughter has managed to retain an amazing sense of humour.
“This is our life. These are the cards we have been dealt,” she said.
“But we take the mick out of her condition and even laugh about it.
“It has made us realise that as long as we have a roof over our heads and food in our belly, nothing else matters.
“We are on this incredibly tough journey together, but it’s important to also see the positives.”
Despite being born a healthy 9lbs 1oz in June 2007, Chantelle said it soon became clear that something was not right with Gypsy.
“She didn’t sleep more than two hours at a time and just seemed to hate everybody and everything. She was only ever happy when with me,” she said.
“But when she reached six or seven months old she had become what was referred to as ‘failure to thrive’.
“She was literally just skin and bone. Her chest was concaved and her belly was so bloated that her belly button popped out.
“She was deeply malnourished and her skin was just hanging off her.” At the age of three, after pushing for further tests to be carried out including brain scans, Gypsy was diagnosed with a rare condition called diencephalic syndrome. The disorder is caused by a tumour located in the hypothalamus area of the brain which is responsible for controlling body temperature, sleep patterns, hunger and certain behaviour.
At the time, Chantelle said animal-lover Gypsy was the only known person with the condition in the UK and was given just a 20% chance of survival.
“When I was told what it was, a lot of it was a sense of relief,” said Chantelle. “I was quite pragmatic about it, whereas my husband Gavin just fell apart and didn’t know how to cope.”
Following the diagnosis, Gypsy went through her first rounds of chemotherapy in a bid to shrink the tumour.
“It was horrendous. She was so frail anyway to begin with and this just made her feel even more unwell.
“She spent about two years on chemotherapy, around around a third of that time was spent in Bangor Hospital (Ysbyty Gwynedd) where she was treated for infections, and given blood transfusions.”
As the condition affects certain behaviours, Gypsy suffers terribly with anxiety, selective mutism, exhaustion and is emotionally overwhelmed at even the smallest things.
“I need to be around her 24-7 as she has extreme separation anxiety,” said mum-of-two Chantelle, from Penmaenmawr, Conwy.
“She is now home educated as school is just too much for her to bear. The world to Gypsy is very scary and sometimes doesn’t make sense, hence why her home is her safe place.
“She’s overcome so many things over the years and is one tough cookie, but day-to-day life can be hard going for her.
“A certain sound or smell, a person or place could put her into emotional shutdown.
“It’s also been really hard on my eldest daughter, Heidi.”
While Chantelle admits the level of care her daughter has received in both Ysbyty Gwynedd and Alder Hey Hospital has been “brilliant”, she had to do homework around the rare condition herself.
“I’m the one who has to pull all the information together,” she said.
“As it’s so rare I just have to grab information on her condition from wherever I can. I know of about eight other families with this condition globally.”
While the tumour is still growing in Gypsy’s brain, Chantelle said doctors are very cautious about giving her too much chemotherapy as she will become resistant to it.
Chantelle, who has raised more than £8,000 for cancer charities such as CLIC Sargent in the past, said Gypsy has been approved for proton beam therapy – a more targeted form of radiotherapy – in Manchester which could offer some hope of the tumour shrinking further.
However, radiotherapy also runs the risk of doing damage to her brain.
She has now started a GoFundMe page dedicated to giving her daughter some day trips, treats and “things to smile about”.
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