Imagine if your body didn’t have the energy to:
· Properly digest foods | · Run |
· Stay warm or cool | · Play |
· Maintain muscle control | · Laugh |
· Walk |
Now imagine if you were a child. Zachary is my 2.5 year old and he struggles with some items on the list above because he suffers from a disease called Mitochondrial Disease. Mitochondrial Disease has robbed his body of the ability to produce enough energy to do these tasks, as well as other tasks that he desires to do on a daily basis. Mitochondrial Disease is a disease that hinders the body’s ability to produce energy, is cyclical and its symptoms vary widely
Zachary has a determined spirit and because of the medical interventions that have been developed he is able to have some good days where he can walk and play with his older brother. However, mitochondrial disease has caused his body to decide what is more important, to breathe or laugh. Some days we know that he is going to sleep 20 hours a day and other days we know that he is going to be able to do the things that other children do.
Some of the things that Zachary deals with on a daily basis are: a feeding tube that goes directly into his intestines, a feeding pump that feeds him specialized formula all day, another specialized formula that he drinks, TPN (nutrition that goes into his veins directly), multiple medications (anywhere from 4-8 meds multiple times a day), braces on his ankles/feet, a wheelchair, a walker, multiple doctor’s appointments and multiple therapies. Zachary is 2.5 years old and even with the feeding pump and the specialized formulas he only weighs 19 pounds and is 31 inches tall. This provides us with problems finding clothes that fit but even more it means that car seats, highchairs, cribs, etc can also be difficult for us to handle. We never know if he is going to be in the hospital or he is going to be fine. In 2009, Zachary was in the hospital 60 days; he also had a number of procedures and surgeries. So far in 2010, Zachary has been in the hospital 13 days.
Mitochondrial disease has no cure and no treatment; there are only band-aids or temporary fixes. On April 24, 2010 the Third Annual “All Aboard For a Cure” walk will be held to raise funds for research, and education, of this debilitating and possibly fatal disease. I come to you asking for sponsorship of Team Zachary. By your financial sponsorship of Team Zachary you will have a hand in changing Zach’s life, as well as the lives of so many children and adults who suffer from this disease. All proceeds from this sponsorship go directly to the United Mitochondrial Disease Foundation whose goal is to fund research as well as provide education to affected individuals and families. Thank you for your thoughts and support in such a vital fundraising effort. You may fill out the sponsorship packet and return it back to me, or you can go online to www.allaboardforacure.com, TEAM ZACHARY.
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