Friends of Sebastien wrote -
Imagine worrying about your child living, worrying about how you'd face another day without them. The Setins live with that. It can be paralyzing if you let it. So they don't let it. They do what they can to save their child's life. Sandra has been on the board of the Foundation for Mitochondrial Medicine for over seven years . Sandra and Christophe created a spice to sell to raise money for a cure. Now through August 24, 2012, if we give up a latte for for one day, we can help fund research for a treatment to help save Sebastien's life.
All we have to do is spread the word to our friends and forgo purchasing a latte for one day and donate the money to the Foundation for Mitochondrial Medicine to help fund a cure for mitochondrial disease. It's not hard if we work together. Help us reach $3,000 by August 24.
Sebastien is an 12 year old boy, who likes to do things any other 12 year old boy likes to do; play video games, watch sports on tv (especially his favorite player, Lebron James), and play baseball. He does all of those things. He also works harder than the most dedicated professional athlete to make it through every single day. He's determined. He's a fighter. And he needs our help to find a treatment for mitochondrial disease. He doesn't need our help in a couple of months or a year, he needs it right now.
Every day it gets harder for him. He won't tell you that, or let you know that sometimes it takes every ounce of energy to even watch sports on tv. He's tough and stoic. But, you can see how hard it's becoming for him to move . You can see how MELAS, the mitochondrial disorder that robs his body of the energy it needs to work, is ravaging his young body.
It's hard to write these words, because I love dear Sebastien, his parents, Sandra and Christophe, and his sister Savannah and brother Sterling. It's hard to think of this amazing kid's body failing him. It's hard to watch a child so young being forced to deal with something as tough as MELAS. Hard to see him losing his ability to walk, and harder still to know the prognosis of kids living with MELAS. It's impossible to even think about what will happen if there is not a treatment.
I know how hard it is for Sandra and Christophe to talk about this and how very desperate they are to find a cure to save their dear boy's life.
They need our help. If we all give something, anything, we could help fund a treatment to save Sebastien's life. MELAS, stands for Mitochondrial Encephalomyopathy Lactic Acidosis and Strokelike Episodes . Mitochondrial myopathy ( muscle weakness) ,Encephalomyopathy (brain and central nervous system disease), Lactic Acidosis (buildup of a cell waste product), and Stroke-like Episodes (partial paralysis, partial vision loss, or other neurological abnormalities) . The cumulative effects of MELAS on his young body are the gradual loss of motor skills ( talking, eating, walking, moving), sensory impairment ( loss of hearing and vision), and dementia.
A cure for mitochondrial diseases will not only help Sebastien and those living with MELAS, Leigh's Disease, and all of the others living with diseases we typically associate with mitochondrial disorders, but will also help people living with Parkinson's, ALS, Hunington's Alzheimer's, and Muscular Dystrophy. Autoimmune diseases like Sjogren's syndrome, multiple sclerosis, lupus and rheumatoid arthritis, have also been linked to mitochondrial dysfunction.
Sebastien needs a treatment. Now. Please give $5. Don't go to Starbuck's for one day and donate the money you saved. We can make a difference. Please spread the word on every social media site you belong, tweet it, FB it, Pin it. Visit Sebastien's Smile on FB and the Foundation for Mitochondrial Medicine for more information. All the money we raise goes directly to research to find a treatment for mitochondrial disorders. We can do this.
We're asking you to give up your Starbucks for one day and donate the money you would have spent there to help fund a cure mitochondrial disease, which will help our friend Sebastien in his battle with MELAS. Sebastien's birthday is June 24th, so that will be the official day, but you can give your $5 starting today.
Together, we can all make a difference.
Lauri and friends