One day I happened to hear from a Marine Corps buddy. I asked him if he would let me share his story with you…
My son was born with a genetic disorder known as neurofibromatosis one or NF1 for short.
The first signs were a skin discoloration known as café latte spots, which look like large birthmarks.
So of course we did.
Here’s our perfect six month old baby and we’ve been told he has a condition that can leave him blind, deaf, paralyzed, disfigured, or can be ultimately fatal…
Now Matthew is three years old.
Thankfully he does not show any visible signs of the more acute symptoms of NF1 other than the café latte spots on his skin. He does have low muscle tone in his upper body and facial muscles (he drools excessively).
What he does have are the learning disabilities that are associated with this disease such as speech delay, attention problems and hyperactivity, and oppositional behaviors. ($1000.00 to whoever can teach the meaning of no to this child)
He currently attends public preschool where he has speech and occupational therapy. Through it all he’s a bright happy little boy with an infectious smile.
Well I’m a nerd so I started researching everything I could on this disease. Then I realized I’m not a doctor nor do I play one on TV. So I started to look for people who have already been there, done that.
While this was going on I was dealing with my own anxieties so I took up running again. I’m a Marine it’s one of the two ways I know to handle stress. (it’s healthier than drinking)
First a 5k, then a 10K. Then I started wondering if I could run further distances.
I saw that the good people of Neurofibromatosis, Incorporated. NorthEast had a Boston Marathon team. I wanted in. I wanted the challenge.
In March of 2013, after my second 10K, I asked them how I could help raise funds for their organization. How does one join the Marathon team? They told me they’d let me know in the fall.
One month later two terrorists tried to end the Boston Marathon. Not going to happen. 2014 promises to be the biggest and greatest ever and I have been offered the chance to be a part of it.
What would you do to keep a smile on your child’s face?
Patrick is running the race and looking to help fund the research for Matthew’s condition. If you can help him go the distance, please support his cause by making a donation here: NFINC NE Boston Marathon