When Jack was born, he was sent home from hospital a happy, healthy little baby boy, but after a few days at home his parents noticed that he seemed to jump and jerk throughout the day.
Doctors initially dismissed this as normal baby behaviour, but as the jumping didn’t ease, Jack was kept in hospital for tests where they soon realised that the involuntary jumping was actually seizures and Jack was having up to 40 seizures a day.
At just a few days old, Jack underwent a number of brain scans and tests resulting in Jack being diagnosed with Ohtahara Syndrome – a rare progressive epilepsy syndrome.
Jack’s parents were told the heart-breaking news that Jack wouldn’t have a normal life.
His condition means that he can’t talk or walk and is fed by a tube. He has to take medication around the clock, almost on the hour, every hour.
Jack’s Dad, John said, “Day-to-day life has changed dramatically. We soon realised that one of us would be best to give up work, so a few years ago I gave up work to become Jack’s full-time carer.
The future for Jack is uncertain, but you just have to get on with things, sitting around and moaning doesn’t help.”
Jack’s parents were recommended to Make-A-Wish after he was taken ill on a short holiday to Wales last year.
After spending a few weeks in hospital in Wales, Jack was transferred to Alder Hey hospital and it was here that a nurse recommended the family get in touch with us.
Knowing how much Jack enjoys hydrotherapy treatment at school, they all decided that Jack would really enjoy having a spa pool at home and that this could offer long-term benefits.
Since having his very own spa pool, Jack and the whole family has benefitted.
John said, “Jack is a totally different child when he’s in the water. When he comes home from school the whole family pile into the spa pool and have a splash about. It’s something that they can all enjoy together.
Jack is just delighted to be splashing around in the water, the water soothes him and it helps to tire him out which helps with sleeping.”
John explained that having the spa pool at home gives the family the opportunity to take part in an activity together, “As a family, you normally have the freedom to decide what to do day-to-day, but with Jack we have to plan everything. It’s quite a challenge to manage things, there’s a continuous stream of doctors’ visits, physio sessions, community nurses dropping in to put in a new feeding line. The spa pool is making such a difference.”
The family have already spoken to a family friend whose daughter has a similar condition to Jack to recommend that they contact Make-A-Wish about granting a wish, as they have found the whole experience simple and smooth.
John told us, “the highlight was when the 5 of us all got in the tub as a family, there were smiles on everyone’s faces and everyone was happy!”
You can find out more about spa pool wishes here.