Angelman Syndrome means that Ted is extremely hard to feed and he rarely sleeps through the night. He is delayed with all of his milestones and it takes weeks and months of physiotherapy for him to master tasks like sitting, holding things in his hands, controlling his movements and stabilising himself. He struggles to look people in the eye as he has significant difficulty with muscle control. When Ted gets sick, whether it is the sniffles or a gastro bug he deteriorates significantly and quickly. He has had multiple rides in ambulances and has had more hospital visits and near death experiences than anyone should ever have in their entire lives. He is prone to seizures and the occurrence is set to increase as is common in Angelman Syndrome.
At the age of 8 months he was at the stage of a 4 month old baby. With the help of his Mum and Dad, Aunty Clancy and Nanna and Dave (Grandfather) he learned to sit through intense physiotherapy. At 15 months he has just learned to commando crawl and together with his Dad Tim he has achieved standing up assisted. This is a massive achievement and proving to be promising as many Angelman patients are confined to a wheelchair and cannot walk.
Speech is severely affected with Angelman patients and we have come to learn that Ted may never speak. If he does, it will be very limited. He will never be able to live independently. He is a very strong little boy which is both very positive for his development as well as something that will become a big challenge as he gets older.
Currently there is no cure or treatment for Angelman Syndrome available which is why we have decided to begin fundraising to support research efforts into curing this condition.
Despite no cure yet, to quote cureangelman.org.au, "Scientists believe it has great potential for being cured"
FAST (Foundation for Angelman Syndrome Therapeutics) is a foundation that was set up by a mother of an Angel. Through this foundation and various other campaigns, so much research has been facilitated that scientists know what causes Angelman Syndrome, and they've cured it in the lab. Learn more about the cure and FAST's plan here.
"A cure for Angelman Syndrome will have a tremendous impact on society at large." ~ FAST Roadmap
The gene that causes Angelman Syndrome has been linked to several other diseases and genetic disorders involving learning and memory and stands to be the gateway cure for many other devastating conditions.
- There is a known correlation between Rett Syndrome and Angelman Syndrome.
- There is a known correlation between Fragile X Syndrome and Angelman Syndrome
- There is a known correlation between ALS and Angelman Syndrome.
- There is a genetic link between Angelman Syndrome and Autism.
- The AS protein UBE3A is decreased in Alzheimer's disease. Amyloid Precursor Protein is a target of UBE3A.
- Angelman Syndrome involves one of the most severe types of and one of the few known genetic causes of epilepsy.