Sonny is five years old and is from Sheffield, UK. His mom shares: “The future is so uncertain for anyone with KIF1A; that’s why it’s so important that the research continues for our son’s future.”
A Message from Sonny’s Family:
KIF1A Superhero Sonny is the most beautiful, happy boy who lights up the room with his infectious smile. He finds many simple daily activities an obstacle but an obstacle he never gives up on. He has fierce determination and nothing stops him! Despite been visually impaired and very unbalanced he never stops; when he falls he just gets back up and carries on. He loves to watch Peppa Pig, play outdoors and spend time with family.
On February 14th, 2019 we got the news that Sonny had KIF1A. We knew nothing about this condition. All we knew was it was degenerative. We were scared, shocked, and emotions were all over the place. We couldn’t understand ‘why’ our beautiful baby boy had all these difficulties… finding out was daunting and we didn’t know what to do or where to turn. Meeting our KIF1A family through KIF1A.ORG made us realize we are not on our own and grateful for everything they do.
Now a year on we understand more are truly grateful for every single day. We understand our boy has development delay and is still yet to talk, has many sensory issues and it’s very obvious he’s autistic; however, “little progress” is huge for us! From him finally sitting up, eating solid foods and using his walker. We couldn’t be more proud of everything he accomplishes! We have the most precious boy with so much determination and the most beautiful personality. Finding any kind of treatment to cure or halt this cruel disease is so important to keep Sonny as well as he is now. The future is so uncertain for anyone with KIF1A; that’s why it’s so important that the research continues for our son’s future.
He truly is our world.
