Community: Charitable Hearts

Julia, age 9, shown on the right (seated, blue shirt)

“Intense love does not measure, it just gives.” ~Mother Teresa

In Columbia, South Carolina there is a family with three children. Davis, age 11; Julia, age 9 and William, age 6. In October of 2012, the Hickson family participated in the UMDF Energy For Life Walk (Charlotte). They did the walk as a family in support of one another and most importantly for their son, William. William was diagnosed with a Mitochondrial Disease at age 18 months. During his six years he has already undergone six (6) surgeries, from hip surgeries (both) to Nissen fundoplication surgery (two different occasions) as well as a biopsy to confirm his mitochondrial disease. William is in a wheel chair and strictly fed via G-Tube, he has never hit a milestone; however, William is an extremely happy child and is supported not only by two loving parents but by both siblings immensely. Both of William’s older siblings are extremely proud of him and love him with such force you not only see it you feel it.

Davis who is the oldest of the Hickson kids actually decided for his sixth (6th) grade “get to know me” project to have his mother,Alice-Lyle, bring William to class so that the other children would understand what Mitochondrial Disease is and to show them that he doesn’t see what they see when he looks at this brother. That was Davis’ “About Me/Show and Tell” and when Alice-Lyle told to me that story it gave me goose bumps and I had to clear my throat in order to choke back happy tears.

Their daughter, Julia, continues to prove herself as a true campaigner for Mitochondrial Disease, decided that for the UMDF EFL Walk held in Charlotte in October 2012 that she wanted to raise money and awareness. When you sign up to be part of the walk you can join a team and/or create your own team or a team page off of an existing team to raise funds that are given in the same pool for the team you are walking for.

“Team William”

The Hickson family walks for “Team William” and Julia created her own team page for “Team William”. She also held on two separate occasions a lemonade stand to help raise funds. Julia (again she is nine (9) years of age) raised over $500.00! How awesome is that! Now that the walk is over and monies have been accounted for and donated to UMDF, Julia still campaign’s for her brother and currently has raised $50.00 since starting her new “jar” for 2013 to be given at the walk this October by entertaining her neighbors with “musical/singing” numbers along with the help of her and her brother’s friends in the neighborhood.

I have a feeling that we’re going to be hearing a lot about this family and I could even see Julia doing more with UMDF/Mitochondrial Disease in the future as Julia grows up. I think Julia is a change-maker, one of those special altruistic souls that comes along once in a while and actually makes a difference.

Facts about Mitochondrial Disease:

Within every cell of the human body except red blood cells, tiny organelles called mitochondria produce over 90% of the energy that the cells need to do their jobs. The mitochondria convert biochemical energy from nutrients into molecules of adenosine triphosphate (ATP), storing energy in the bonds inside the molecules. When the cells need power, they break the ATP molecules apart and use the energy from within those bonds. This process repeats over, and over, throughout the body.

In mitochondrial disease, part of that process is inhibited. Not enough ATP is produced, so there is not enough stored energy. Cells are not powered sufficiently, and that resulting power outage can cause a myriad of issues in various parts of the body. Symptoms can vary widely and range from mild to debilitating and life-threatening. The disease is degenerative. Typically, systems of the body with high energy demands (brain, heart, liver, and skeletal muscles, etc.) are at highest risk from mitochondrial disease. Some people will mitochondrial disease have gastrointestinal issues; others have autism or cardiac issues. William Hickson’s mitochondrial disease [complex 1] affects most of his body.

“Let us not be satisfied with just giving money. Money is not enough, money can be got, but they need your hearts to love them. So spread your love everywhere you go.”
~Mother Teresa

More special UMDF News:

******************Elise Duquette and Mike Lindenberger were married Saturday, October 6, 2012. Instead of party favors, they asked for donated monies to UMDF in honor of Rachael Mira Albertson who passed away on December 16, 2008 at the age of 10. Elise had been Rachael’s nanny. This was submitted by Rachael’s grandmother, Joyce*************************

To learn more about Mitochondrial Diseases and the various deficiencies/syndromes and more, please visit: www.umdf.org

If you would like to donate to “Team William” you are more than welcome to donate directly to UMDF in care of Team William/Hickson Family.

Has your family or someone you know been affected by Mitochondiral Diseases? What resources did you find to be helpful?