help little Jude recently diagnosed with CACNA 1A

Hi, my name is Jess and I’m the sister of Kristy who’s 1 year old son just recently diagnosed with CACNA 1A.

The Stewart family are made up of Kristy (mum), James (dad), Douglas (2 years) and Jude (just turned 1).

After a long year of waiting, Jude has finally been diagnosed with CACNA 1A. His symptoms presented in his first months with uncontrolled eye gaze and hypotonia.

Children with CACNA 1A find it challenging to walk and talk. They deal with serious medical issues, such as life-threatening seizures and migraines that cause muscle weakness and paralysis. Many variants cause neurodegeneration, meaning brain cells are dying. There currently is no cure.

Due to Jude’s muscle weekness and up roll gaze the Stewart family has been funding all his appointments, physio, neurologist, O.T and many others. As a result they have gone through all there savings and Kristy has had to return to work as a teacher.

I would like to try fundraise for them to take some pressure off and for kristy to take on less days as she deals with this diagnosis and able to attend all the therapies.

What the future holds for beautiful Jude is uncertain at this stage as all children with this gene present differently as they age.

But we have hope that with regular therapies Jude’s muscle tone and other symptoms will improve.

Any money funded will go directly to the family to help fund his appointments and so kristy can cut down her hours to attend his appointments.

We Greatly appreciate any help in such a difficult time financially for many people.

Jude is such a special boy, always happy and smiling… we just want the best for this sweet boy.