Wednesday, March 24, 2010


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, TEAM ZACHARY.

Please email me if you have any questions or if I can help you in anyway!

Thursday, January 28, 2010

a Mini update

Sorry that it has been forever things have been kinda crazy, We spent from Dec 27th to Jan 5th in the hospital with Zach. He is doing better though and although he is having hard days he is doing wonderful and I am amazed at what all he is doing.

My Wonderful Cousin is putting on the "2010 Miss Georgia CBA Benefit Pageant" It is going to be put on for Zachary and for some of the things that he needs. She is going to try to raise enough money for us to purchase the SleepSafe HiLo bed for Zachary. Insurance won't cover it because he is technically able to still use the crib. However, with this bed, he will be able to have the head elevated to the position that he needs for his reflux without using extra pillows and since it is still enclosed it will allow us not worry as much about him jumping out and pulling out his button. He will be able to use it for years as well, he will be able to grow into it.

The 2010 Miss Georgia CBA Benefit Pageant will be held on March 20th, from 10am-4pm. If you are interested in entering it, then you can contact her, I am going to post the link to the facebook page and you can contact her from that. She is also going to be selling the tickets to attend, I think that they are 5 or 10 dollars a piece. We also realize that not every family has girls that want to participate so they also have a list of things that we need if you are interested in donating that way.

Please pray for this....It would be a huge blessing to get this bed for Zach but it also is sharing the face of MITO. Please go look at her event page for it!