It took me a long time to write this letter last year and I am going to repeat myself and tell you my story, and the reason why I want you to support me in participating in this year's Energy For Life Walkathon. I know each year you've been asked to donate to many worthy charitable organizations. Many of you have supported me the last few years. This is the second year United Mitochondrial Disease Foundation organizes the Energy For Life Walkathon in San Francisco Golden Gate Park. In writing about my story, I am at a loss for words. I want to raise awareness, and to let you know why I am trying to do the little that I can to make a difference.
Mitochondrial Disease.... what is that? "Mitochondrial disease occurs when there is a defect in the body’s ‘powerhouses’. The mitochondria fail to produce enough energy. That results in organ systems failing. Imagine a major city with half of its power plants shut down. The same thing happens in the affected person’s body. The brain may be impaired. They may lose vision or hearing. The heart may be weakened, and they may have eating and digestive issues. The symptoms range from mild to severe for each affected person. The disease is fatal and there is no cure."
In Logan's case, we found out that over 90% over his mitochondria were not producing enough energy, esp. in his brain, thus causing stroke-like symptoms in his brain stem. Ever since he was born, he had difficulties with breathing, eating, acid reflux, and poor muscle tone. He stayed at the NICU for a month before being discharged with a feeding tube and a big oxygen tank. Before he was discharged, he went through a ton of tests to figure out why he was still having problems with feeding and breathing. There was no clear answer. The doctors hoped that as he grew older, he became stronger. It was not until a couple weeks before he passed away, that further rare genetic tests revealed that he had Leigh's Disease, a type of Mitochondrial Disease.
*discharged from NICU at one month old*
There is NO cure for Mitochondrial Disease!!
It's not like cancer, where chemo or radiation might help. It's not a tumor, where you might be able to take it out. It's not a kidney failure, where a transplant might save your life. It is basically all of the above and more. You can only manage each symptom at a time: like putting a bandaid on each time, but never curing the actual illness.
Every 30 minutes, a child who is born will develop a mitochondrial disease by the age of 10.
Imagine the hopelessness you feel when being told your child has a disease with no cure. Imagine comforting your child each day while he or she is suffering through many visits to the hospital and getting the little veins poked at by different needles. Imagine what life would be like when your child has a nasal tube and can't go anywhere without an oxygen tank. Logan spent half of his short life in the hospital, and had experienced all of that.
I want to thank you for reading this far. I hope you will support me, financially or walking with me on April 13 (Saturday) at Golden Gate Park. I hope after reading this, you know more about this illness. I hope after reading this, you will give your child a big kiss and a big bear hug. The pain of losing a child never goes away. I hope no other parent has to experience what I had. I hope we will find a cure soon. Logan blessed us with his presence, and I want his presence to make a difference.
Energy For Life 2013: San Francisco -
DONATE to Team Logan the Lobster
April 13, 2013 (Saturday)
Golden Gate Park, Music Concourse Bandshell,
San Francisco, CA
Registration at 8:00am -
Registration at 8:00am -
Walk starts at 9:00am (Rain or Shine) - 5K or 1 Mile
Thank you,
Virginia
Thank you,
Virginia
