Just4Children
Get Isabelle’s Little Legs Stronger
Just4Children are raising funds to provide a specialist trike and therapies for Isabelle so she can join in with her friends and get her little legs stronger.
Story
Isabelle is aged 2 from Tilbury. She was born on time and initially looked fine and healthy. After only a couple of hours she deteriorated rapidly and ended up incredibly poorly and was rushed to Great Ormond Street.
On arrival Isabelle was found to have TAPVD heart condition. She needed lifesaving emergency surgery and the odds were very much against her. But, in spite of those odds and a number of complications she came back to CICU open chest on an oscillating ventilator.
After 3 weeks on the heart ward we noticed her head was getting bigger and she was found to have hydrocephalus so another emergency surgery was required to fit a VP shunt to her brain to drain the fluid. This was really traumatic and she suffered a lot with low pressure but again we eventually managed to get her stable(ish).
Isabelle was also suffering with terrible reflux and not tolerating her feed via NG tube so this was changed to an NJ tube but she still wasn’t a happy sausage.
We left Great Ormond treet after 3 months but we still had huge problems with sleeping, vomiting, bum explosions and neuro irritability.
Last year we received genetic results back which showed Isabelle to had Phelan McDermid Syndrome which is a chromosome 22 deletion. This gave us an umbrella to put all her issues under and a reason why she has endured so many problems.
In January 2023 Isabelle suffered with a shunt block and infection which required another month in hospital and she hasn’t regained full use of her hands since. She received a Nissens procedure to help her reflux but this has now failed and she is fully peg fed and non verbal.
That’s all the rubbish stuff she’s been through but, despite all that she’s the bravest little girl you will ever meet. Her laugh is infectious and she loves her dog walks and sitting on her pony. She has regular sessions with our fantastic OT and this helps her loads.
We are raising funds for Just4Children to help buy her a trike to join in with her friends and to continue with her therapies. If you can help even a little we would really appreciate it.
