Stroll-a-thon

That last blog took a lot out of me, I have some catching up to do! Two weekends ago Ashylnn’s parents put together a very successful stroll-a-thon to create awareness for and raise funds for Rett’s Syndrome. They held it at a beautiful park in Orem where we strolled, got our faces painted and watched a fun animal show. Here are the pictures from the events…

While waiting for everyone to arrive we let the girls play…

Ready, Set, Stroll!

The Stroll was a piece of cake for Bizzie! 

Face Painting…

Bizzie becoming a tiger…for those of you who know my girls, imagination is a prominent part of their being…as far as Bizzie was concerned the minute the make-up went on she WAS a tiger. 

Here’s Autumn becoming a leopard…

 

And Animals… chinchillas, and hedgehogs and parrots – oh, my!

I thought the whole thing was a success. The Utah families with girls who have Rett’s were able to congregate and offer support to one another, tremendous funds were raised, and everyone had a lot of fun! Bizzie asked me later, “Is Ashlynn going to stroll again next year?” So one last time here are some of the Utah Angels…

There's so much we can do...

I have a beautiful niece named Ashlynn. She loves horses, music, family and friends. She's a painter, a 4-h -er, a hiker, an adventurer, and explorer. And she brings absolute joy to all who know her. Ashlynn needs help doing the things she loves and was blessed (and vice versa - as her parents would say) with wonderful parents who strive to make her life have all the happiness it can have. At an extremely young age Ashlynn lost her ability to talk and walk, an incredibly frustrating journey ensued to discover the cause and was finally found. Ashlynn was diagnosed with Rett Syndrome. At the bottom of this post I will put a quick description of what Rett Syndrome is - but to get right to the point is this: how can I help? What can I do?

Ashlynn and her family celebrated her 12th birthday this month with an Awareness Party and sent out this information to all who came. "On Feb. 8, 2007 in a landmark study, Dr. Adrain Bird announced that the symptoms of Rett Syndrome were reversed in a genetic mouse model. Breathing and weight normalized, mobility and gait were restored and tremors disappeared! While this study did not present a cure, a proof concept was achieved. Prior to this study, it was believed that a cure would only benefit girls who had not started exhibiting symptoms of Rett Syndrome. Now it is believed that both girls and women will benefit when a cure is found. The search for treatments and ultimately a cure is more crucial now than ever."

We can go to http://www.rettsyndrome.org/ and vote for Pepsi to donate $250K to furthering research for Rett Syndrome. It seriously only takes 2-4 minutes to do. And we have until tomorrow to get as many votes as we can in. And we may be able to try again next month if we don't win it this month. I wish I could personally introduce each of you Ashlynn. Meeting her changes those hard spots inside of me, she makes it easier to love and see the beauty in this world...she makes giving up 2-4 minutes of my day an "of, course" instead of "do, I have the time...?"

We love you Ashlynn!!!

Rett Syndrome is the leading genetic cause of impairment in girls. it is caused by mutations in the MECP2 gene. 95% of girls diagnosed with Rett Syndrome in the United States have this mutation. A girls is born every 5 hours with Rett Syndrome and if effects all ethnic, racial, and socioeconomic groups. Rett Syndrome is 1 of 4 diseases primarily affecting females. 20% of all girls and women who have Rett Syndrome may never walk at all, and about 1/4 of those who do walk will lose the ability. 80% of those affected by Rett Syndrome will experience at least one seizure in their life. Approximately 90% are at risk for some degree of curvature of spine. The most severe handicap in Rett Syndrome is apraxia, which is the difficulty to carry out thought to purposeful action. Most girls and women live with near constant repetitive hand movements while awake, irregular breathing and sleep patterns, as well as gastrointestinal issues.

If you would like to help, donations can be given directly to Ashlynn or made on Ashlynn's very own donation page found at http://firstgiving.com/utahangelwalk. On behalf of Ashlynn , her parents and the hundreds of people who know Ashlynn and love her - thank you. Thank you for taking the time to become aware.