Michael was born one week before Christmas (he was actually due to be born on December 25) an early Christmas gift that we had all anxiously been waiting for. He was perfect, 10 fingers, 10 toes and big blue eyes, what else could we ask for. We brought him home and started our new life as a family of 5.
As the months went by we started to notice that Michael was missing some major milestones, in my gut I knew that there was something wrong but I just did not want to believe it. After numerous doctors appointments, MRI's, blood work and endless conversation with medical professionals Michael was diagnosed with SPG50 an ultra rare neurodegenerative disease.
As our neurologist explained what Michaels future looked like, words like severe developmental delay, non verbal, spastic paraplegia and confined to a wheelchair by the age of 10 painted a picture of a future that no parent wants for their child.
It's unbelievable that our happy, lively little boy will gradually regress and be lost to this terrible disease. We won' t sit back and watch Michael be taken away from us. He deserves better and we need to help him reach his full potential.
SPG50 is a progressive brain disorder that begins in early childhood, it is caused by just one missing protein… but it’s an important one. Because he doesn’t have this protein, as degeneration rapidly progresses Michael will lose the ability to use his feet, hands and slowly his brain will depress until there is nothing left. They call it a progressive cerebral palsy.
Our goal is to raise $3 million dollars in 1 year, to give Michael the chance he deserves to live a full life. We can’t just sit back watch him decline while there is something that can be done to keep him moving forward.
We are asking you to Help us give Michael a brighter tomorrow!
We need your help to contribute what you can , and to help share #JourneyToCureMichael, #CureMichael so it can go viral, and our goal can be reached.
Michael can have a Brighter Tomorrow thanks to you.
HOW YOU CAN HELP TODAY
1. Donate what you can, any amount is appreciated
2. Share on all social media with hashtags #CureMichael #JourneyToCureMichael
3. Email this GoFundMe link and these steps to all contacts you know
4. Leverage any avenue you have to make this go viral (or send leads/tips to [email redacted])
WHERE IS YOUR MONEY GOING?
Every penny will go to research being done right now on SPG50 through several amazing hospitals and universities around the world. We are currently racing against time to fund this research, trial and ultimately cure for all SPG50 children. ***Any donations received above the goal will go directly to additional research into SPG50***
WHY SO MUCH MONEY?
Getting a clinical trial up and running can cost millions of dollars. In Rare Diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. If we can’t fund it, the clinical trial will not happen!
TIME IS OF THE ESSENCE
All efforts made now to help Michael develop normally will be lost if we do not find a cure, spasticity and neurological delays will begin to affect him as early as 3, that's less than 16 months away.
THERE IS A CLEAR FAST TRACK PATH TO TREATMENT
1. Create proof of concept
2. Manufacture clinical grade drug production
3. Final safety studies
4. FDA approval to proceed with clinical trial
5. Start clinical trial
Websites & Social Media
From the bottom of our hearts we thank you, we will be forever grateful for your help and support to help Michael reach his full potential.