Treatment for Ashton
Ashton desperately needs diet therapy, however without DHB funding we are unable to afford the ongoing costs.
Ashton is a 3.5 year old boy, he is outgoing, funny, caring, and adventurous.
Ashton has Doose Syndrome (myoclonic astatic epilepsy).
Life as he knows it consists of hundreds, sometimes thousands of seizures a day, a cocktail of 5 different medications which can sometimes take hours to administer, and having to wear a helmet from the moment he wakes until he is in bed at night. We spend numerous hours in the emergency department and countless nights in Wellington Children's Hospital.
So far Ashton has been unresponsive to 5 different Anti- convulsant medications, there is very little chance any medication will help reduce his seizures. He has many different sorts of seizures.
Ashton's best shot at reducing seizures is diet therapy. The most effective treatment for him would be the Ketogenic diet. This therapy works by forcing the body to burn fats instead of sugars often reducing seizures. However at this stage it is not an option to us.
The next best thing is the Modified Atkins Diet, which is a less intense version of the Ketogenic diet. It works the same way and can be very effective for some.
You may wonder why we don't just do the research and start the diet ourselves, this is because they are medical diets and must be done with highly trained professionals and monitored very closely.
Sadly we are unable to get funding though the CCDHB and are having to go privately to a dietician. There is only one dietician with enough experience and training to oversee his diet and she is in Auckland. As well as having to pay for ongoing consultations and medical costs we will need to take him to Auckland to meet the dietician and initiate the diet. Other costs involved will be return transport to Auckland and accommodation there and also ongoing special dietary requirements.
Kim is a solo mum doing everything she can to get Ashton the help he needs, but money is a huge hurdle. It is very sad that this is the situation when money is a barrier and prevents a child from accessing medical care which could give him a far improved quality of life.
With your help we are hoping we can reduce Ashton's seizures and in turn greatly improve his quality of life.
barbara dobson's involvement (page creator)
I am Ashton's grandmother and am doing this on behalf of my daughter Kim.
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This page was created on 9 Dec 2015 and closes on 1 Mar 2022.