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.
If we could all give up having a Starbucks’ latte for one day, we can help fund research for a treatment to help save Sebastien’s life. Together, we could give over a million dollars. Here’s the math..our household alone has over 3,000 “friends” on FB. If everyone of our friends gave $5, and got 100 of their friends to give $5, we’d have $1, 750,000. All we have to do is spread the word to our friends, forgo purchasing a coffee for one day, and donate the money to the Foundation for Mitochondrial Medicine to help fund a cure for mitochondrial disease. The money is not hard to raise if we all work together.
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.
Imagine worrying about your child living, worrying about how you’d face another day without them. The Setins live with that. That fear can be completely paralyzing if you let it. So they don’t let it. They’re doing everything they can to find a cure for mitochondrial disease. Sandra has been on the board of the Foundation for Mitochondrial Medicine for over seven years and she and Christophe created an amazing spice to sell to raise money for a cure.
This wonderful family needs our help now . If we all give something, anything, we could help fund a treatment that could 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 issues) . The cumulative effects of MELAS are the gradual loss of motor skills ( talking, eating, walking, moving), sensory impairment ( loss of hearing and vision), dementia, and organ failure.
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 disorders 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.
Sebastien’s birthday is June 24th, so that will be the official ” Day without Starbucks for Sebastien” , but you can donate today . Please spread the word on every social media site you belong to.. tweet it, FB it, Pin it. Visit Sebastien’s Smile and Chef Jean Christophe Setin on FB and the Foundation for Mitochondrial Medicine for more information about Sebastien and mitochondrial disorders. All the money you give goes directly to research to find a treatment.
We’ve created a page: http://www.crowdrise.com/daywithoutstarbucksf/fundraiser/sebastien
Together, we can make a difference.