Media

The awareness campaign is ramping up as we move closer to the Family Fun Day on Sunday 26th of October and we are starting to hit the press.
This one was from the Daily Telegraph on line with the link, but in case it falls off, below is the article in full (wish I could put a filter on those wrinkles…..they’re a shocker when the pic is so big and online:

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Help little Eddie who has two rare diseases, says mum

Mother Ali Malone with son Eddie, 4

Mother Ali Malone with son Eddie, 4

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.

Mother Ali Malone with son Eddie, 4, who has two rare diseases and his mum is raising awa

Mother Ali Malone with son Eddie, 4, who has two rare diseases and his mum is raising awareness of Neimann Pick Disease Type C, which is described as childhood Alzheimer’s.

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.

Only three families are involved with Australian NPD Foundation which is trying to raise $100,000 to support the research. If you want to help go to cure4edsharp.wordpress.com

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

Untitled

AND HERE IS THE LINK:

http://www.pressreader.com/australia/manly-daily/textview

 

Our little guy, enjoying reading up on his story

photo

Westmead Children’s Hospital 2012-2013 Annual Report
image

Chemo Chronicles December 2013
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