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Parents whose teenage daughter has a rare genetic condition have described life as an “emotional rollercoaster” made bearable by the “magical” care and support they receive from East Anglia’s Children’s Hospices (EACH).
Jada-Lea Quow, 15, has duplication of the chromosome 19, which leads to a range of developmental issues. It was detected shortly after she was born prematurely in June 2009, weighing just 3lb.
At the time, parents Trevor and Michelle were told only one other child in the world had the condition – and that was a boy in Japan.
Jada-Lea’s prognosis looked bleak, and her life expectancy was short.
However, despite major operations, time in hospital and spells on life-support, the music-mad teenager continues to defy the odds – much to the delight of her proud, dedicated and loving parents.
“No-one expected her to live this long, and she’s a very spirited and determined girl,” said Michelle.
“The doctors didn’t know much about her condition when she was born.
“There was a long list of things that could affect her future, and we keep ticking them off as she gets older.
“When her health takes a turn for the worse, we brace ourselves and rush her straight to hospital.
“It’s been horrific at times, and we’ve been at breaking point.
“There has even been talk of turning her life-support off, but we’ve never been prepared to do that. Not while she’s still fighting.
“Jada-Lea continues to defy the odds, and we’re so lucky to have her in our lives. Even the doctors can’t believe it and are shocked.
“It’s amazing, and we feel fortunate and blessed. We love her very much and know some other parents aren’t as lucky.”
Jada-Lea has had two stomach blockages, both leading to spells in hospital in Leicester – just over an hour’s drive from their home in Peterborough.
The most recent led to her having to stay there for six months, only returning home shortly before last Christmas. She has been unable to attend school at Lime Academy Orton since June.
Michelle says her daughter has been a different person ever since, although there are signs her infectious personality is returning.
“She’s not the same little girl,” she said.
“She used to be very alert and loved dancing and shuffling around in her wheelchair, because she’s a big music fan.
“Now, sadly, it’s a totally different ball game.
“She can’t go to school, and she’s having immunology treatment every three weeks at Leicester Hospital.
“She’s been more withdrawn since her last spell in hospital, but we’re starting to see some smiles and giggles again.
“She’s beginning to show signs of the hilarious daddy’s girl she used to be, and hopefully she’ll be able to go back to school in the not-too-distant future. She needs to get out of the house and interact with other children.”
Jada-Lea, who is tube-fed and unable to walk or talk, loves music, bright lights and noisy toys.
She also enjoys watching clips of her dad play football, as he was a former professional midfielder for the likes of Peterborough United, Gillingham and Northampton Town.
Trevor said: “She loves being around people and interacting with others.
“She’s just a very beautiful, joyful girl, and, as well as music and lights, she loves watching football.
“I’ve shown her a few clips of me playing, and she knows it’s me as soon as my face appears on the screen. She reacts straight away.
“It’s funny, and she’s obsessed with football. I think it gives her energy, and obviously I’ve bribed her to be a Tottenham fan!”
Michelle and Trevor say they would be lost without EACH, having received support since Jada-Lea was referred in late 2024.
Since then, she has enjoyed short breaks and expert nursing care at the charity’s hospice in Milton.
“We can relax and switch off when she’s there,” said Trevor.
“It’s peace of mind and a rare opportunity to recharge our batteries, ensuring we’re better equipped to deal with things when she’s back home.
“Without that respite, it’s impossible to do anything.
“We can’t have a break or holiday, and our lives are very different to what they used to be.
“Everything has changed, but we love her very much and will always put our heart and soul into caring for her to the best of our ability.
“We’re so grateful for the support we receive at Milton.
“We really need it and feel at breaking point much of the time.
“We also have an 18-year-old son, Dion, and want to spend time with him, but all our energy must go into Jada-Lea.
“It’s heartbreaking, and I know lots of other families in our situation feel the same. It’s a constant fight.”
Trevor and Michelle have shared their story to highlight “a gaping black hole” in the care and support available to families in the Peterborough area.
“We want to try and help other families, especially those that might not know about EACH,” said Trevor.
“In terms of respite care, there’s nothing here, and it’s a gaping black hole. The only break we get is when Jada-Lea’s at Milton.
“I believe there are lots of others in the city who aren’t aware of this amazing charity.
“I admit I was apprehensive and uncomfortable when I first heard about it.
“I didn’t want to accept the reality of our situation, but it’s got so much easier, and I now realise what a special place Milton is.
“It’s so reassuring knowing she’s in safe hands, around people who know exactly what she needs. For Jada-Lea, and us, as parents, it’s a safety net.”
Michelle agrees.
“It’s helped enormously, knowing help and advice is only a phone call away,” she said.
“It’s not something I take for granted, and I don’t think people understand the mental health side of things, in terms of what families like ours go through. It’s very stressful and an emotional rollercoaster.
“There are times I’m at breaking point, and then I feel guilty for having negative thoughts. It’s heartbreaking.
“However, the staff are so brilliant and welcoming at Milton.
“I appreciate the little touches, and it’s like having another home.
“Life’s a pressure-cooker until the moment we pull into the car park. Then I can feel myself relax, knowing she’s safe and in good hands.
“It’s an amazing, magical place, and I’ve never heard anyone say a bad thing about EACH. We’re so thankful, and I couldn’t manage without it.”
