Joseph Migliozzi via Crowdrise
April 20, 2015
BENEFITING: National MPS Society, Inc.
EVENT DATE: Apr 26, 2015
In memory of our son Christopher Joseph who passed away from MPS I (Hurlers Syndrome) I am raising money for the MPS Society. His 12th birthday would have been on April 24th of this year.
This year I wanted to do something special for Christopher. I am participating in the Westfields Sprint Triathlon on April 26th. It’s a 250 meter swim, 12 mile bike ride and 5k run. I've done one before and it was a great experience. I'm not a world class athlete by any means so these smaller events are perfect for me. My knees and back don't take too much abuse and I don't feel too bad afterwards. Since this is my first fund raiser I'm looking for small donations from any friends or family that can spare a few dollars. The donations will go to the National MPS Society which is the organization that supported our family through the most horrendous time in our life.
To tell a little of our story, my son Christopher was born on April 24th, 2003. We knew pretty quickly that something was wrong. My wife Paige worked tirelessly to find out why he was having hearing issues, a hernia, always fussy, trouble sleeping, constant acid reflux, etc. It took almost 6 months before he was diagnosed with MPS I (Hurlers Syndrome). Hurlers Syndrome is a genetic disorder where your body doesn't create a specific enzyme it needs to break down a byproduct created by the body’s cells. This byproduct builds up and eventually causes loss of mobility, heart and organ problems and skeletal problems. If untreated the mortality rate is 100% by age 12. In our case Christopher was treated with the only available treatment which is chemotherapy, a bone marrow transplant and enzyme replacement therapy. Unfortunately Christopher developed a blood disorder after the transplant and passed away on June 11th, 2004. Our little fighter only blessed the earth for 15 months. The treatments and hospital stay lasted from November 2003 until June of 2004 with him in the hospital almost continuous from January to June. If you would like to read more on Christopher check out our website, www.christopherjoseph.com.
From a fathers perspective I could never put into words what I went through watching my son get sick and then pass away. The hopelessness and powerless feeling knowing there was nothing I could do to make him better. No matter how much I tried to find the best doctors, ask the right questions, be with him through every step and still not be able to protect and save him. It’s a feeling that I can't describe and would never want anyone to have to go through. Being a father of a child that has past is a lonely group to be in. There aren't many of us and I'm happy about that. I wouldn't wish this on my worst enemy. But for those that are in our small club it’s a shared feeling we all know too well. Every holiday, birthday, special event has its own heartache that doesn't ever go away, it just dulls over time.
This small fund raising event is one thing I can do in his memory and power me through the event. I know he is watching over me and rooting me on when my knees are yelling and back is throbbing. Go Daddy, you can do it....