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Monday, March 17, 2014

Street Class: Turner Syndrome Riley Run Created on Bluegrass Avenue

While most people were hiding away from this winter's cold weather, friends and family of Katie Roberts were taking to the streets for the Turner Syndrome Riley Run. Roberts' daughter, Riley, was diagnosed with Turner Syndrome in 2012. At the time of her diagnosis, Roberts and her family had never heard of Turner Syndrome. "We quickly realized that Riley was receiving the best care available due to the outstanding Turner Syndrome Clinic at Children's Hospital. My husband, Harold, and I wanted to find a way to give back and to raise awareness of Turner Syndrome," said Roberts.

Roberts is a resident of Bluegrass Avenue, and came up with the idea for the Turner Syndrome Riley Run while out enjoying a run one day.  February is Turner Syndrome Awareness month, so Roberts and her family felt it was the perfect time to organize the 5K-A-Day Riley Run. "We tried to set up a fundraiser that was very easy to participate in; those who wanted to offer financial support could donate through the Cincinnati Children's Hospital Medical Center giving website. Those who wanted to run along could do so at their convenience, and post to our Turner Syndrome Riley Run Facebook page. We tally all the miles run everyday and do an 'awareness' post everyday," said Roberts.



Roberts gathered a supportive group of participants to join in the Riley Run. "In addition to Harold and I, there are around 10 runners who are participating either daily or intermittently through February," said Roberts. The participants consist of friends, family, others impacted with Turner Syndrome, and even physicians from the Cincinnati Children's Hospital Medical Center. According to Roberts, "Riley's dad, Josh, also helps by sharing and fundraising through social media. Anyone can run and post their miles to the Facebook page."

Riley, who is currently 11-years old, was diagnosed just before her 10th birthday. "Initially, there was a big impact as she went through many tests and scans to understand how she was personally impacted by Turner Syndrome, since it can vary greatly. She currently is monitored by about 7 specialists on a regular basis. These are all coordinated by the Turner Syndrome Clinic (Endocrinology). At Riley's age, they are interested in the therapies to maximize her growth potential," said Roberts.

Once Riley was diagnosed with Turner Syndrome, Roberts and her family had to adapt their new life with Turner Syndrome. "After the initial shock that comes with any diagnosis, you begin to digest and understand the challenges, and then you adapt.It helps to have strong support, which we have found a wonderful community of Turner Syndrome girls (or "butterflies") and their families," said Roberts. Roberts also credits the support of friends and family for helping them deal with Riley's diagnosis. Roberts also is quick to express her appreciation for Riley's school, Ruth Moyer Elementary. "It’s also hard to mention support without bringing up how great the students and faculty at Moyer have been," said Roberts.

Roberts outlines some of the symptoms of Turner Syndrome. "In general girls with Turner Syndrome are small, often falling below the "0" line on the standard growth charts. I'd also like to share the top 5 signs of Turner's Syndrome in infant girls:
1. Swollen hands and/or feet.

2. Excessive neck skin.

3. High palate.

4. Widely spaced nipples.

5. Diagnosis of a "left-sided" heart defect (for example, aortic coarctation).
Turner Syndrome is due to the absence of all or part of one sex chromosome, usually one X. Which is why TS girls are sometimes identified as XO. We like to think of this as a kiss and a hug," said Roberts.

Roberts has been greatly inspired by Riley's strength. "The most unexpected and surprising impact is that we’ve learned so much about Riley. We couldn’t be more proud of the level of resilience she displays on a daily basis. It truly is inspirational." Riley's diagnosis has not only changed her life, but also had an impact on Roberts' outlook on life. "Without sounding to cliché, I guess it's really opened our eyes to a whole new world and given us and even deeper appreciation for life, family, and love," said Roberts.

Each day, Riley must deal with the impact of her diagnosis. This is no easy feat for a person of any age. "Riley would say this biggest impact comes from the daily shots she has to take. As you might imagine, these can be difficult. No child would find this easy, no parent would either. She was actually diagnosed with Celiac Disease, which is common in Turner Syndrome, years before her TS diagnosis. We are a gluten-free household because of this and though we are used to it, it can be a challenge for others," said Roberts.

Roberts wants the Ft. Thomas community to know that, "the two people you keep seeing running outside in this terrible February weather are not crazy, just dedicated. They are doing it so that more girls can be diagnosed earlier in life and have better outcomes and more options." During the Riley Run, the Roberts family hopes to achieve two goals: to raise awareness or Turner Syndrome, and to raise money for the Cincinnatus Foundation for Research and Education on Turner Syndrome at the Cincinnati Chidren's Hospital. With approximately 1 in every 2,000 girls are born with Turner Syndrome, the efforts of the Riley Run's participants will certainly be helping to aid a very important cause.

For more information about the Turner Syndrome Riley Run, check out http://giving.cincinnatichildrens.org/turnersyndromerileyrun. You can also find out more about Turner Syndrome at www.turnersyndrome.org.

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