For the love of Jude

From birth Jude has suffered from a rare muscular dystrophy disease called nemaline rod myopathy. We knew something was wrong as Jude wasn’t meeting his milestones and seemed weak/floppy. Although I did mention it whilst at weighing clinics it was never highlighted to other health professionals until just after a year old Jude got seriously ill in hospital following a virus. This resulted in Jude being put in a coma, we then did tests which revealed Jude had this life limiting disease.

The same thing happened again just a year later but from catching the flu this time, each coma was devastating and recovery was extremely exhausting for him.

Jude started doing small amounts of physio and from there we built his muscles up to the point at 2 1/2 years old he finally started to walk.

Jude walked with a walker for 3 1/2 years until he started to grow so fast his muscles just couldn’t keep up.

Jude is now 8 years of age and is completely reliant on his powerchair and bipap of which was introduced at a infant age just after his first coma. He can’t breathe by himself anymore and is palliative care, we receive support from our local children’s hospice.

Jude has very little that he can do in his life but he absolutely loves the beach, gaming and powerchair football which he does with Ipswich town football club.

Our aim is to get a specialised beach chair and a bullet powerchair for him so he can wholeheartedly enjoy the remaining years of his short life.

His complex needs which includes a dropped head because of a extremely weak neck means he needs both chairs specially adapted. This makes it financially impossible for me to purchase as a single mum of three children.

I hope we manage to reach this milestone for our little superhero who shines even on the darkest days.

Thank you for taking the time to read Jude’s story.

Michelle (mum), Jude, Rhys and Faith

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.