Ever since I could remember I wanted to grow up and be a mom. I was that little girl playing with stuffed animals and dolls playing out motherhood.
On September 7th, 2007 I was blessed with a little boy name Jack. He came into the world as a fighter and earned his badge of courage before he was a week old. I was never guaranteed he would leave the NICU but he did. Being a NICU Mother tore open my heart open nothing could get worse…
On January 23rd, 2009 I received news of Jack’s disease and his death sentence. The NICU experience turned into easy. I was literally told to go home and love him. How does a Mother grieve the loss of a child that was in front of them? How does a Mother love their dying child?
Today – you Jack Fowler have gifted the world with your presence. You are a reminder that this small life is so much bigger. That my journey to become a Mother was larger then I could have ever imagined as a little 6 year old girl playing with dolls.
Jack’s love, wisdom and depth is beautiful. He has shown me that amidst the pain and suffering there is beauty. After January 23rd the “normal life” was wiped away. A new life was given, filled with precious gifts. And now each day has become one.
Please watch our video…
Fowler Video 👈🏼click link
I recall laying on a lounge chair on my parents screened in porch late August. I remember I was tired and brought the kids to them so I could breathe a little. We had moved from Denver to Chicago a couple months prior seeking medical help for Jack. Everything about it was exhausting.
My friend and fellow Dragon Mom Deb called to share the recent findings of research that was shared and spoken about at the Boston National MPS Society conference which we were suppose to attend but instead moved across the states. She mentioned Nationwide and Sanfilippo gene therapy. And the word of interest in MPSII, Hunter Syndrome in the future. At the time Deb’s son Trey was securely placed in the intrathecal trial. She was resting with hope of stopping his progression and wondering how to stop Jacks. We soon added our hardworking leader Melissa to the call. She too had a son, Case, secure in trial and determined to help save Jack. So we developed a plan. A plan to convince researchers to take on a Project to save boys with Hunter Syndrome Lives. It started with an idea and soon turned into mice models, lab space and mice mazes & MRI machines. Soon it turned into $100k. And to keep it parent driven it soon turned into needing 2.5 million to put into a child. All along this project the aggressive disease was taking over my boy. I soon had to digest that Project Alive was about changing the future of Hunter Syndrome and not saving Jack. Saving boys who are being diagnosed today, tomorrow and yesterday. All coming from the idea of helping save Jack.