Sebastian and NKH research
Donation protected
My name is Sandra Cawthorn and I am raising money for my son Sebastian and his ongoing medical and special needs, also hope to raise awareness and funds for NKH research.
Seb is almost 9, he has a severe and rare genetic metabolic condition called Non Ketotic Hyperglycinemia, It effects his brain, causes daily seizures, he is unable to walk, talk and unable to support his own head.
He is a beautiful boy with a warm loving soul.
Although he can not talk he can communicate with his eyes and the only way for his communication to strengthen and build is for him to get an eye-gaze device., which we have now received!! Many Thanks to all who have helped Seb get this amazing opportunity.. And Special thanks to Steve Waugh foundation and Seb's Special friend and OT Jess for applying to many organisations for our darling Seb.
We are already seeing some heart warming, tear making moments.. And looking forward to the day he starts communicating with us!
We are keeping his go fund me account going as Seb has many ongoing needs for the future and all can be pretty costly, like splints and upgrades for his eye gaze, also our next big goal is for a new wheelchair, which will be electric, as he's getting to be a big boy now.
Also we want to help find a cure for NKH so a portion of all that is donated to Seb will be passed on to NKH research.
Thanks for taking the time to read about our darling Seb
Seb is almost 9, he has a severe and rare genetic metabolic condition called Non Ketotic Hyperglycinemia, It effects his brain, causes daily seizures, he is unable to walk, talk and unable to support his own head.
He is a beautiful boy with a warm loving soul.
Although he can not talk he can communicate with his eyes and the only way for his communication to strengthen and build is for him to get an eye-gaze device., which we have now received!! Many Thanks to all who have helped Seb get this amazing opportunity.. And Special thanks to Steve Waugh foundation and Seb's Special friend and OT Jess for applying to many organisations for our darling Seb.
We are already seeing some heart warming, tear making moments.. And looking forward to the day he starts communicating with us!
We are keeping his go fund me account going as Seb has many ongoing needs for the future and all can be pretty costly, like splints and upgrades for his eye gaze, also our next big goal is for a new wheelchair, which will be electric, as he's getting to be a big boy now.
Also we want to help find a cure for NKH so a portion of all that is donated to Seb will be passed on to NKH research.
Thanks for taking the time to read about our darling Seb
Organizer
Sandra Cawthorn
Organizer
Kingston TAS
