by Cynthia Claxton, blog contributor for Leaping Butterfly Ministry
This blog post is about caring for Turner, offering Turner syndrome support and offering education about TS.
Periodically, I interview those who have been instrumental in growing the LBM organization or those who have been supported by our organization.
This month, I sat down with Danielle Sokol, co-chairman of the 5th Annual Seeds of Faith Celebration.
You had a special connection with Kellie, Debbie Browne’s daughter who had Turner syndrome. Tell me about your relationship with her.
I met Kellie when my mom’s company was doing some decorative painting on the ceiling and in the kitchen at Debbie’s house. I was helping with the painting. We would have what I would call scaffold parties, dancing and singing and having fun on my painting breaks.
My mom and I were also members of the Carlton Woods Bible study group. Kellie and I attended some of the Bible studies and also worked together on independent studies that Debbie would host. Kellie was super sweet; she always had a smile and was cheerful and full of joy. I love Kellie and think of her often. I love her mom just as much!
It was your idea for launching the first Seeds of Faith event. Describe how that came about.
Debbie and I were thinking about Kellie and how we could honor her life and raise awareness for those impacted by Turner syndrome. Originally, Debbie was thinking of a ladies’ luncheon to start things off. I very nicely told her that we needed to go big or go home if we wanted to truly honor Kellie and support the TS community.
We wanted as many people as possible to hear about TS and its impact on families, getting as many people involved as we could.
I had never been in a position to create an event of this scope; however, I had been involved with area fundraisers, serving on committees and supporting other organizations that had hosted events. It was a challenge to build this event up from the ground floor, requiring lots of hard work from everyone involved.
We were very blessed on our first event, pulling together a very successful event in about a six-week time frame.
Since then, this event has kind of snowballed into what it is today … having an established event committee, long-term supporters and sponsors and consistent support from attendees.
Your passion for LBM fundraising efforts has continued over the years. What keeps motivating you to support LBM and the TS women?
With my involvement with the Seeds celebrations each year, I’ve learned more about Turner syndrome … how it affects a thousand new babies a year. That’s one every 8 hours; yet, it’s still not a household name. In fact, Turner syndrome is the second most common genetic disorder. I am shocked that so few people have heard of it.
Unfortunately, the actual percentage of baby girls born with TS could be much higher because TS is a spectrum disorder. There is a wide range of life-long symptoms and not all individuals affected by it experience the same conditions.
We know of other conditions and disorders because there are giant organizations raising millions and millions of dollars and with thousands supporting their causes.
It is so important that we educate everyone we can about TS … how it’s not easy to diagnose, with many parents not even knowing how to test for it or if they need to test for it. There’s a specific test for Down’s syndrome and other disorders. But, TS is so unknown by doctors. They don’t know the telltale signs of TS.
That’s why we are on a mission to help doctors receive the right education, along with moms and dads in general, on the signs to look for.
We want moms and dads to know that there is support for them and their daughters if they are diagnosed. And, that there is long-term support for their daughters as they transition into adulthood. Between heart defects, hearing loss, learning disabilities, infertility and other health conditions, their daughters need support, especially as they transition into becoming working adults.
In 2 Corinthians in the Bible, Paul the Apostle wrote that God loves a cheerful giver. Giving my time and resources to LBM through the Seeds event puts a big ‘ole smile on my face!
What is your hope for LBM’s future?
We all have huge plans for this organization. I’m so thrilled about how far we’ve come in just 5 short years.
I pray that we can continue to grow each and every year and keep helping even more girls and women as we grow.
LBM needs an even bigger presence in the Turner syndrome and the medical community.
We need pediatricians proactively looking for the signs of TS. It’s a proven fact that the earlier that a girl with TS is diagnosed and can take growth hormones along with estrogen therapy, her life will be improved and some of their conditions will not be as severe.
One option that ob-gyn doctors can offer is in-vitro-type karyotype testing which can determine if a female baby has Turner syndrome. If this test can be completed on a female baby early in the pregnancy, the future for the baby will be better.
Sadly, it is estimated that only 1% of pregnancies in which the fetus has Turner syndrome result in live births. A shocking 98% of TS pregnancies end in miscarriage.
Ongoing education and a long-term support system is critical for every person touched by Turner syndrome. LBM is going to continue to develop new support options to its followers, including the launch of a spiritual retreat in 2019 to lift up and encourage those impacted with TS … allowing each attendee know that they are wonderful and that they can feel amazing as they adjust to the realities of TS.
Thank you Danielle for your ongoing support for LBM and those touched by Turner syndrome.
Danielle and the LBM team look forward to seeing you on February 22nd at the 5th Annual Seeds of Faith Celebration at The Woodlands Country Club.
Have you got your tickets? If not, click here.
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.