Thursday 12 September 2013

Miss Melia's Run for Rett

I have this friend who is an incredible mom. Actually I have many friends who are incredible moms, but I want to tell you about one specific incredible mom. I have known Tanis since I was really young; in fact, I thought she was my cousin until I was about 10. No joke. Now that Tanis and I have both grown up sort of we've started families of our own and become Mama's to our little "mini-me's." Our stories, while much the same - in that we do school runs, grocery shops, clean house, and drive minivans - differ incredibly. Tanis' oldest, her daughter Melia, has Rett's Syndrome. Now if you're like me, you read that and had no clue what it meant. Cause I didn't when I heard the diagnosis a couple years ago. But I've been learning. And what I've been learning isn't great news. Here's a brief summary, courtesy of wikipedia:

       "Rett syndrome, originally termed as cerebroatrophic hyperammonemia,[1] is a neurodevelopmental disorder of the grey matter of the brain[2] that almost exclusively affects females but has also been found in male patients. The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitivestereotyped hand movements, such as wringing and/or repeatedly putting hands into the mouth, are also noted.[3] People with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures.[4] They typically have no verbal skills, and about 50% of individuals affected do not walk. Scoliosis, growth failure, and constipation are very common and can be problematic."

Melia and friends at one of the Rett Syndrome conferences this year
Melia is one of many girls facing this condition with no cure. Yet. This is where you come in ;) Being that Melia has an amazing Mama who doesn't take 'no cure' for an answer, Tanis does fundraising year round to help research take place. October is Rett Syndrome awareness month, and in honor of that Tanis has organized a virtual 5 km race called "Miss Melia's Run for Rett." How this works is you go HERE and register [at $25 this is a steal of a deal!] Then, Tanis sends you a race bib, you run/walk/crawl 5km[whatever you are able to do to cross off those km's!] sometime during October and take a picture of yourself in your race bib and gear. Send that awesomely sweaty photo to Tanis, and she'll send you a medal! All the proceeds from "Miss Melia's Run for Rett" will benefit Team Miss Melia - Girl Power 2 Cure [(, a 501c3 nonprofit organization.]

Tanis ran the "Disney Princess Half Marathon" this past February to raise funds and awareness

One of the best parts of this run is that it can be done ANYWHERE in the world on ANY day in October! You decide when you race - then do it:) So who wants to do something good for their bodies, while helping find a cure? If there is interest in running as a group, contact me and I'll set something up!

1 comment:

  1. Great blog! You have described Tanis as I know her, incredible mom. She's a wonderful supporter of Rett girls everywhere, but she is an especially fierce supporter of sweet Melia! I'm in. I'm registered. I can't wait!


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