November 18, 2013
Its been half a year and some amazing progress has been made in the Niemann Pick Community! The National Institute of Health has begun a drug trial with the drug Chase has been getting and many more of these kids are going to be able to access it. Chase WILL be getting the drug into his brain finally! yay! The hospital review board has approved and we are going to have him treated hopefully before the month is through. Thank you all for your support. There is no way we could do this without you!
May 4, 2013
Meet my 3 1/2 year old son Chase Owen! Chase has a really awful disease called Niemann Pick Type C, sometimes its referred to as Childhood Alzheimers. Its super rare, with about 500 known cases worldwide. Chase's Dad and I each carry one mutated chromosome 18 and one good chromosome 18 and didn't know it until Chase was diagnosed at the age of 25 months. There was a 75% chance that the disease would not have been passed on. The odds were not in his favor & It is up to me to change his luck. That's where you all come in!
There is no present FDA approved treatment for his disease. Chase developed normally until he was a year old. Now he cannot walk and lost speech. He has an NG tube in his nose to get him supplemental nutrition and to allow him to take multiple doses of medication each day. He does eat normally though. That one point is key. This disease is fast moving and always fatal. Once it onsets (and the age can and does vary depending on what mutation is on those bad chromosome 18s) there is supposed to be no going back and you begin to head towards hospice. We know, we were there in October of 2012. Precious little Chase was in the ICU requiring oxygen to breathe, unable to eat or make eye contact. He never smiled.
Until October 20th, 2012. Twenty four hours after the Hospital restarted an infusion protocol a researcher designed for him Chase laughed watching a dog push a baby carriage on America's Funniest Home videos. A team of really incredible doctors, led by a caring Geneticist got him back on his meds in the nick of time!
The drug is a sugar complex called Hydroxy Propyl Beta Cyclodextrin and four other US children are on it and doing very well too. Those other kids also get the drug, HpBCD, into their brains. In order to get the drug into Chase's brain so he can hopefully turn the new sounds he is making to words we need $$$. The doctors and support staff need to be paid for their time, FDA filings, lab tests and supplies.
Two additional potential treatments have recently come to light and they are mind blowing in their potential. We seek out everyone working on this disease and the researchers are happy to collaborate. There are formal trials being applied for at our National Institutions and Internationally. Chase is too young to be in these trials. If we don't seek them out on our own and have him treated under Compassionate Use protocols Chase will not live long enough to see these therapies emerge.
PLEASE consider a donation to help us keep him alive long enough to see the treatment options that are just going into clinical trials.