In January this year, our son Blake was diagnosed with a 1 in a million medical condition called Alternating Hemiplegia of Childhood (AHC). He was correctly diagnosed with this condition after us believing he was epileptic for the past year and a half and spending months on and off in hospital.
Alternating Hemiplegia of Childhood is a neurological condition characterised by reoccurring episodes of temporary paralysis, often affecting one side of the body. It is a rare condition that affects approximately 1 in 1 million children and Blake is the only known child with this condition in South Australia.
We have extremely limited access to resources in Australia to help us provide the best care for Blake. There is a Multidisciplinary AHC clinic in North Carolina and we would like to take Blake there at the end of this year. The clinic will provide comprehensive and tailored evaluations of Blake to help us better identify the problems he has and will create a customised care plan to coordinate improved ongoing care with his local professionals to maximise his quality of life. We believe that this will be the turning point for Blake’s care moving forward.
Whilst in America, we would also love to take our children to Disneyland. Blake and our girls have had to endure so much over the past year and a half and it would mean so much for us to be able to take them there and share this amazing experience as a family. Blake absolutely loves Mickey Mouse and being able to meet him as well as all of the other Disney Characters would be a dream come true.
We can only achieve our goal of taking Blake to America through the generosity of individuals like yourselves and are incredibly grateful for all donations!