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Help little Eddie who has two rare diseases, says mum
- MANLY DAILY
- SEPTEMBER 03, 2014
When Eddie Sharp was diagnosed with a rare disease at birth known as ‘childhood Alzheimer’s’, it was a devastating blow for his family.
But then shockingly, when he was two, it was discovered he also had a rare form of cancer, totally unrelated to the other disease.
His mum Ali Malone, 41, and dad Peter, 43, who have two other children, said the news was “mind-blowing”.
“We took a deep breath and said: ‘Right, how will we get through it?’” said Ms Malone, from Manly Vale.
But, despite their own personal plight, they are not interested in sympathy, but in raising awareness of rare diseases, in particular, Neimann Pick Type C.
The genetically inherited disease means Eddie is unable to process cholesterol properly. The cholesterol builds in his liver and spleen and eventually in the brain, doing irreversible damage.
Known as the ‘childhood Alzheimer’s’, there are an estimated 15 other cases in Australia, but there is no cure.
His parents were originally told he would not survive 18 months.
But, Eddie has astonished doctors by battling on, especially as he is also now fighting another rare disease, Acute Lymphoblastic Leukemia, which he was with diagnosed last year.
Neimann Pick Type C is slowly robbing Eddie of his motor skills and he is no longer able to walk. Eventually his mental health will also deteriorate and he will suffer dementia.
“He walked before he was diagnosed with leukaemia, but he got so sick he lost muscle tone and I don’t think he will be able to walk again,” said Ms Malone.
Ms Malone said that although Eddie’s cancer is rare, because it falls under the oncology umbrella, there was a lot more support for him.
Eddie spent most of last year in hospital undergoing treatment, including chemotherapy, and was offered play and music therapists. There was nothing offered to Eddie as a sufferer of Neimann Pick Type C.
Despite his trouble Eddie is a cheeky chap, according to his mum.
“He’s spent the last 18 months with me or someone by his side the whole time, so he’s used to a lot of attention,” said Ms Malone.
“He’s also got as good sense of humour.”
The family is backing a research project being conducted at the Florey Institute of Neuroscience and Mental Health in Victoria looking to find a treatment, not a cure, for Neimann Pick Type C. The research could also lead to a breakthrough for Alzheimer’s patients as the two conditions are closely linked.
A Family Fun Day is being held at Balgowlah Bowling Club on October 26, and some of the proceeds will go towards the research project.
And this is from the Manly Daily hard copy
AND HERE IS THE LINK:
Our little guy, enjoying reading up on his story