by Kelly Ranallo, guest blog contributor for Leaping Butterfly Ministry
I often wonder why so many people missed the small but important pieces of her story.
Low birth weight, small stature, frequent ear infections, and, ultimately, the struggles of school and friendships should have been enough.
But after years of watching my outgoing butterfly turn almost invisible, I knew we were missing something.
Following 8 ½ years of not knowing the right questions to ask and floundering from doctor to doctor, we finally got a diagnosis – Turner syndrome.
Although not truly appreciating the full impact this would have on her life, we at least had an answer; one that we thought should make our journey easier.
Unfortunately, however, for those impacted by Rare genetic conditions its often not that easy. Instead we were now challenged with finding specialists that understood TS and hoping to connect with other parents that might help us navigate this unexpected journey.
We knew Allie was fortunate. As physical therapist, I grew up in the medical community and understood the complexity of medical jargon. My husband and I had the financial resources to access the top specialists and attend the national conference.
But what about the other families? Would they have access to the same level of care and connections that we did?
Allie and Kelly
Knowing that we were going to fight the fight to ensure Allie had the very best care it only made sense to try and make it easier for every family that would join our journey.
In 2007, I joined the Family Advisory Board at our local Children’s Hospital.
My goal was to develop a new model of care for girls and families whose lives had been touched by Turner syndrome. A model where families could access coordinated care in a “one stop “ model and connect with other families.
Along with the support of a wonderful team of healthcare providers, we launched the Great HeighTS clinic in 2011. A place where families from would drive from 6 surrounding states to be connected with other families and leave with the piece of mind knowing that they accessed the best care possible for their child.
Guests at the Great HeighTS clinic
Pictured: Three of our girls along with their Shadow Buddies dolls. Others pictured: Marty Postlethwait, Founder of the Shadowbuddies Foundation and members of the SWAG “SportingKC Wives and Girlfriends”. SportingKC is our professional MLS Soccer team here in Kansas City and pictured are the amazing women that help support the “pink party” — helping at the party by doing our girls’ hair and nails.
But what about the thousands of other families who couldn’t access our clinic?
In 2014, the Turner Syndrome Global Alliance (TSGA) was founded to connect Science, Resources, and Funding to the TS community.
Our vision was to help develop comprehensive care centers through out the United States. As of today, there are 28 identified clinics/providers that specialize in Turner syndrome care. You can find a full listing at www.tsgalliance.org
Although the majority of them specialize in pediatric care, our goal in 2018 is to expand the clinic model of care to meet the unique challenges and unmet needs of our adult women.
We feel very blessed to be working along side Debbie Browne and The Leaping Butterfly Ministry. Debbie inspires a sincere commitment to the adult women of our TS community and we hope to build upon this passion.
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Leaping Butterfly Ministry relies on donations to change lives, to create awareness of Turner syndrome, contribute funds for research, and support for those touched by TS. Click here to see how you can help.
