For those
of you who know me, you know I am a little crazy. For everyone reading
this who doesn't know me, please let me tell you a little about
myself. This may help explain the craziness. I am a 37 year old
happily married mother of two beautiful boys. I teach swim lessons
part time and love my job. On the outside, my life is seemingly
perfect.
Life hasn't
always been perfect for our youngest son Jack. Jack is 6 years old. He
was diagnosed with Mitochondrial Disease when he was just two years
old. Mitochondrial disease is a chronic, progressive and potentially
life threatening disease that can affect every system of the body.
Jack had a feeding tube surgically placed in his stomach when he was
three due to many G.I. problems. He receives multiple medications
twice a day every day through this tube as well as pedialyte to keep
him well hydrated. He also receives supplemental nutrition through his
tube if he doesn't take enough food orally.
Jack tires
quite easily, and wears a backpack with his feeding pump hooked up to
his belly to help him get through half days in Kindergarten. The rest
of his class goes to school for a full day. Jack cannot tolerate
heat. If he overheats, he can go into a metabolic crisis, and his
systems can shut down. He is limited to the amount of outdoor activity
he can do for many month s of the year. If Jack gets a simple cold, he
can't fight it off as easily as other children, and he has a tendency
to be down for a long period of time. Jack is also a bright, handsome,
funny, silly, amazing boy who has touched many lives. He and his big
brother Matt are the light of our lives.
Having a
child with a disease is not easy. Life is far different from that of
your friends, family, neighbors, classmates and co-workers. We lead a
somewhat sheltered lifestyle. We avoid crowds, avoid heat, avoid
travel and spend much of our time dealing with insurance, filling
prescriptions, going to the Doctor's office or just contemplating what
may come next.
We have
been quite fortunate that places like The Hole in the Wall exist. Last
year, Hole in the Wall opened its doors for a Metabolic Disease family
weekend. It was two of the best days of all of our lives. At camp kids
like Jack are able to just be kids. No worries. They swim,
create masterpieces, have food fights, sing, ride horses, climb rock
walls. Everything is possible at camp. There is medical staff on
duty 24 hours a day, 7 days a week, so not only can Jack experience
things he never would otherwise, his dad and I can relax and have the
piece of mind that his medical care is being tended to.
This year I
have been given the opportunity of a lifetime. I am running the Boston
Marathon as a part of Team Hole in the Wall. I am running to raise
enough money to send a child to camp for one week. I have a chance to
give back to an organization that makes dreams come true. I am asking
for your help. Please consider a donation to Team Hole in the Wall. No
matter how big or small, you will be making a difference in Jack's
life, as well as the lives of many other children just like him.
-Kristin
