Rare Chromosome Awareness Week and #Active4Asher
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Update: GIVEAWAY details are here.
- Get up and get moving on Monday, June 13, 2016. Only pics or tweets posted on 6/13/16 will be counted.
- Tag @FitFam6 and use hashtags #Active4Asher2016 and #a4agiveaway in your pics.
- Entries will be placed in numberical order and selected randomly.
June 13th is around the corner and for our household, this day and the week around this day became "something" last year. It is a day our family hopes to bring awareness to Rare Chromosome Deletion Disorders and to share how #rareisbeautiful
In 2014, our youngest son, Asher began to have health issues. Prior to that, as his mother, I had concerns about his development and raised questions almost immediately. When his issues had reached a peak in March 2014, he was hospitalized. From there began a long journey with many many tests and specialists to find out why our once chubby (but still small baby) was now 8 months and just under 12 pounds. It was heartbreaking as parents. Many hours driven in a car throughout Northern California, thankful for all the family support and so blessed by the patience and flexibility of our other 3 children, Asher was finally diagnosed with Chromosome 13q deletion - not a hereditary occurrence, just something that happens. Something even the prenatal blood tests and amniocentesis I had done couldn't detect because those tests look for very specific chromosome abnormalities.
Yet we were now given an "answer". An answer to why he wasn't sitting up, rolling over, eating solid food and so much more. We were told his deletion was limited to perhaps 250 cases reported, give or take. Studies were limited and they couldn't tell us what the future would hold for him. Doctors and case studies had presented situations where some with his diagnosis live full lives, with the support of intensive therapy during the younger years, but more often examples were of children who had limited speech, limited mobility and significant cognitive delay. Most with his deletion do not end up walking or if they do they walk at age 4 or older, most have limited to no speech due to gross motor delay and almost all have other health issues including allergies and respiratory conditions.
As Asher's family, we are determined to beat those odds and have him be one of the few that walks, talks and so much more. With that, we wanted to share with others our story, his story and to encourage runners and non runners alike to get out on the 13th of June and be active. We want to encourage others to take the day to be grateful for the ability to walk, run, jump, skip even. We hope to show others that Rare is beautiful, that everyone has their own hard battle despite the appearance on the outside, and that acceptance of all abilities and talents is a wonderful thing.
Again this year, we want to encourage you to get out and be active anyway you want. Get up and get moving with friends, with your children, with your pet. Take all the selfies and tag us in your pics: @fitfam6 and #Active4Asher2016 on Instagram and Twitter. We want to see them all! Your pictures and hopefully your support gives us encouragement, It helps our little family on our hard days and it reassures us that people are learning, becoming aware of Rare Chromosome Disorders (RCD). RCD is more than Down Syndrome, Trisomy 21, Trisomy 13, Turner Syndrome. It includes children that are not easily identified because of a physical difference. Let's create a day full of encouragement, support and understanding.
Aaannndddd, for those who might want to partake in a little GIVEAWAY, additionally tag your Instagram/Twitter pictures with #A4Agiveaway. All photos must be posted and tagged on June 13th, winner chosen on June 14th. For additional entries, visit our blog here on June 13th and comment on any post.
* Disclaimer: Active4Asher is NOT a fundraising event and is not affiliated with any organization. However, if you would like to learn more about Rare Chromosome Disorders, become involved and/or donate you can check out this site: www.chromodisorder.org
