Samiya1

June Military Inspired Exercise Challenge

Help us raise awareness for 22q syndromes while you exercise.
June 1, 2016 – June 30, 2016




June Military Inspired Exercise Challenge

The June 2016 US Military Exercise Challenge is dedicated to Samiya. Samiya is a six year old girl with 22q11.2 Deletion Syndrome.

 #Run4Samiya is an exercise & fundraiser challenge. This challenge started about seven years ago when, Major James Cook was deployed to Afghanistan over the holidays. December is a hard month to be away from your family but its also hard to stay motivated to exercise. So he started the 100 mile run challenge. Soldiers would write their name on the board and each day they ran, they would count down their miles from 100 to 0. They had the month of December to run 100 miles. This not only kept them fit, it helped keep their mind on the mission and not missing home as much. In December 2015 he had over 100 runners and many people didn’t want to wait until December to do the challenge again. So he decided to do it again in March 2016 but with a charity twist. His youngest daughter has Type 1 diabetes so he dedicated the money raised to JDRF. This time he has picked The International 22q1.2 Foundation, Inc. in honor of Samiya. The challenge has been expanded from just running to all exercise. The goal is to complete 100 miles in June 2016. You can earn a mile by running or walking. But you can also earn miles by any other exercise you wish. If you do 10 minutes of cardio that gets logged as 1 mile. So 25 minutes on the bike or elliptical will equal 2.5 miles toward your total.

This challenge is hosted on the Facebook page below. Post your miles to his page and he will track them and post a spreadsheet each night. You will agree to donate 10 cents per mile that you complete. The goal would be to complete 100 miles and donate 10 dollars. Many will donate more but all agree to donate a minimum of 10 dollars. Anyone can join. One hundred percent of proceeds goes towards supporting The International 22q11.2 Foundation. There is no doubt you will be motivated to exercise!

Visit Facebook Page #Run4Samiya

 samiya

Meet Samiya

Samiya Nicole Ralph was born on November 6, 2010 while we were stationed in Vicenza, Italy. On November 12, 2010, Samiya went into cardiac shock and was transferred from the Vicenza NICU to Verona NICU. The doctors discovered later that day she had an Interrupted Aortic Arch (IAA) which stopped the blood flow through her body. Once Samiya was stable, the surgical correction to her heart was performed by Dr. Luciani on November 17, 2010 in Verona. Three days later, she went back into surgery for a minor correction and chest closure.

During the initial surgery, Dr. Luciani noticed Samiya was missing her thymus gland. From his past medical study, children with heart complications in conjunction with missing their thymus gland were found to have DiGeorge Syndrome. Therefore, he ordered a Fluorescence in situ hybridization (FISH) test that “maps” the genetic material in a person’s cells. About 5 weeks later, the results confirmed that Samiya had 22q11.2 deletion syndrome (which is also known by several other names such as DiGeorge Syndrome). This syndrome is caused by a deletion of a small piece of chromosome 22. The deletion occurs near the middle of the chromosome at a location designated q11.2.

After several failed extubations and a few other complications, Samiya was finally able to breath on her own on December 22, 2010. On January 4, 2010 we were medevac’d to Germany in preparation for our return to the states.

Many children with 22q11.2 deletion syndrome have developmental delays, including delayed growth, speech development and learning disabilities. Samiya displays all of these symptoms. She has also had a total of 6 hernia repairs. Recently we learned she has a small cleft palate which requires extensive speech therapy before any decision is made to do surgery.

In spite of her medical problems and developmental challenges, she is doing well and living life like a DIVA. My Little Diva is what I call her. Anyone who has the chance to interact with Samiya absolutely adores her. She is now 6 years old and loves cheerleading, playing with Barbie’s, singing and dancing.

Thank you all for your participation.

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