Jackson is a gorgeous little boy with a complex undiagnosed medical condition. He has the most amazing smile and giggle, no matter how hard life gets, he is always happy but unfortunately as he grows so does his sensory disorder.
He is part of the “100,000 Genome project”, which is looking for rare and new diseases but no joy as yet.
His day to day life is extremely hard as he has to have oxygen 24 hrs a day, he can’t swallow, he is jej fed direct into his bowel and gets all his nutrients via a line direct into his artery as well as being delayed in his development.
Jackon has the most amazing smile and giggle no matter how hard life gets, he is always happy, unfortunately as he grows so does his sensory disorder.
Any money received will go towards equipment that Jax needs to live a ‘normal life ‘ that isn’t provided by the NHS.
We do not have a charity that can help us financially (if he had a ‘named diagnosis’ we could tap into designated charities but he doesn’t as there is only him).
Things that we have bought so far are his sensory equipment for his room, his weighted protac ball blanket, his specialist buggy as well as storage for his medical equipment.
The next thing we are looking to buy for him is a special needs car seat, due to his age and height he should be able to be in a ‘normal’ seat but obviously that’s not suitable. We also need to get a medical fridge for the van to carry his TPN in so the fund would get that.
The fund is there so for , as an example,, if his buggy broke we could buy a new one. if we ever get chance to take him on holiday it would pay for specialist travel insurance etc.
The fund is literally paying for Jackson to have a normal life whilst we battle to get a diagnosis.
All help that we receive will be gratefully accepted and very much appreciated so THANK YOU in advance.