Eleanor continues to support a variety of charities including the Anthony Nolan Trust and Macmillan Cancer Support following the untimely death of her husband DAVE in September 2015 to a rare and agressive form of Leukemia.
Love and Light.
Matthew, sadly, lost his fight for life on April 10th 2007, at the age of 13.
He had been poorly for many weeks and passed over peacefully at Claire House Children's Hospice in the presence of his devoted mum Jan, dad John and sister Kate.
Matthew touched many lives during his lifetime and his legacy will continue as others learn of his determination to overcome profound difficulties and be inspired by his story.
He lit up the room with his dazzling smile and will be remembered in our hearts as an 'Angel'.
Matthew was a remakable young man, who will remain an inspiration.
Love and Light
Here is his Story . . .
Matthew is a 10 year old boy who suffers with Angelman Syndrome. Lots of people ask "What is Angelman Syndrome, I have never heard of it?".
So I hope to explain a little bit about the condition, the first steps to diagnosis and what you need to know as you watch your Angelman child grow.
As Matthew Grew Older...
Matty developed seizures, remained very pale, still did not sleep very much and was delayed developmentally. Although he was on a cocktail of drugs he still remained happy, calm and sociable.
Matthew developed a scoliosis(a bend in the spine) due to poor muscle control which occurs in about 40% of children and because of this and his poor co-ordination Matty does not sit, stand or walk and is wheelchair bound, but we hasten to add, not all Angelman children are wheelchair bound and we have observed lots of children walking with assistance.
Other observations made in Angelman Children:
- Flattened back of the head
- Continual chewing and salivating
- Pale skin and eye colour
- Affects males and females alike
How Is Matthew Now?
Matthew has been through a lot in his 10 years, although Angelman Syndrome is not life threatening, Matthew has developed chronic lung problems which have nearly taken his life on a couple of occasions.
But through it all, he has remained extremely positive and brave. He has a wonderful quality of life and is always happy.
What is Angelman Syndrome?
Dr Harry Angelman, a paediatrician, first associated several children presenting with the same characteristics back in 1965. He described the symtoms as:
But due to the lack of medical technology Angelman Syndrome was only officially diagnosed in the 1990's.
- Unstable Jerky Movements
- Small Head
- lack of speech/few words
- Abnormal EEG
- Happy, smiling demeanour
What Is The Official Medical Diagnosis?
Today we know Angelman Syndrome is genetic disorder caused by abnormal function of a gene located within a small region of the maternal Chromosome #15. This presents itself as a deletion in 80% of cases; the remaining 20% are diagnosed solely upon clinical findings.
The Matthew Ellis Trust
(for Angelman Syndrome)
7 Ladywood Road
Tel: 01925 415498