Thursday Henry decided he wanted to write something to help his friend. We decided to video the process, as you can see, typing one letter at a time is a very long and arduous process. It took Henry hours to type and edit that paragraph. It was hard and Henry decided to not to share the parts that were too emotional. Sebastien is one of Henry’s best friends, he loves him dearly and he has watched his body get weaker and weaker each day. I am so proud of H for writing this, it was very, very hard for a thirteen year old boy.
This is the last week of our grassroots fundraiser, “Day Without Starbucks for Sebastien” to help find a cure for mitochondrial disease for Henry’s friend Sebastien. We have raised $2,600 since June. Thank you to all that have already given, and for those of you that haven’t please do what you can. If you can’t give anything right now, please spread the word on Facebook, Twitter, Pinterest, Tumblr..everywhere.. it helps so much.
There is no overhead and this money will all go directly to the Foundation for Mitochondrial Medicine. I am still optimistic that if we all passed this along to our friends and just gave $10 each we could raise a million dollars easily. I am convinced not too far in the future, this type of global help will be the norm, it’s already happening. Social media campaigns are helping kids like Amelia Rivera get life saving transplants. There is a petition on change.org to help Paul Corby receive a necessary heart transplant (if you haven’t signed it, please do). Paul was denied a transplant because of his label of mental disability. It seems impossible that something like this could happen, but it is. Together, we can help change that. By collaborating, we have the power to create change, make the world a better place, and help save lives.
The Setins made this video, Sebastien’s Smile that explains more about what Sebastien has gone through and the devasting effects of MELAS. You can also read more on the website about their story and the spice they created to raise money for a cure ( ALL proceeds go to the Foundation for Mitochondrial Medicine).
It’s so hard to talk about, but it is necessary, Sebastien’s life depends on a treatment. He needs our help. Please do what you can. As Henry says in the video, “Sebastien would do it for you, I would too if you need help”. Help us raise over $5000 by the 24th of August. Day Without Starbucks for Sebastien
Hi thereIm wondering how you went about seittng up Mito Canada. Ive been thinking about something similar for Ireland as while UMDF and Mito Action are terrific, I think we need something more regional based but with afficiliations to UMDF, Mito Action in the US, Mito Canada and Mito Australia. I know through the facebook page that there appears to be a need for something in Ireland so I would appreciate any information you could give me.Some background my 4 1/2 year old son Jack was diagnosed at 14 months with Complexes I, III & IV missing and has chronic renal failure, hypotonic and is profoundly deaf. He is on the Q10, Carnetene and Vit C for mito & other meds/feeds for the renal failure included pd dialysis 6 nights a week at home & is ng fed.Look forward to hearing from you.Christine