Annual Seeds of Faith Celebration helps girls fight Turner syndrome

THE WOODLANDS, Texas – It all started when Kellie died. No parent ever wants to go through that. Children are supposed to outlive their parents, not the other way around. Or so we’re told. But when Debbie and Larry Browne lost their 28 year-old daughter, Kellie, after a lifelong battle with Turner syndrome, everything changed.

“On Leaping Year Day of 2008 she passed away due to complications after heart surgery,” Browne said. “Four years later, I published a book called Loving a Leaping Butterfly. It is a true story about my relationship with Kellie as she was diagnosed at 5 years old with Turner syndrome.”

This set the Brownes into motion for what would become a mission to educate and support those just like Kellie – those with Turner syndrome (Ts). According to the Turner Syndrome Society of the United States, Turner syndrome is a chromosomal disorder that affects one in 2,000 female births. It is caused by the loss of an entire sex chromosome. They do not have a complete set of X chromosomes as a normal female should. They either are missing one, or one is broken. This causes numerous issues in puberty and development that causes problems throughout their lives. Some of the symptoms include:


Delayed puberty

Heart defects

Puffy hands and feet

Infertility due to nonfunctioning ovaries

Kidney, thyroid, and liver concerns

Hearing loss

Recurring ear infection

Learning difficulties (in some memory related areas, although most patients have normal intelligence levels).

Scoliosis

Social difficulties

It also includes some common physical traits such as:


Short stature (under 5 feet)

Webbed neck

Many moles

Low-set ears

“They need medical attention in all categories,” said Browne. “Turner syndrome babies are born with scarred or missing ovaries. In their chromosome pair they do not have a complete set of two Xs. There can be serious heart, liver, kidney, and thyroid issues.”

Ts currently cannot be traced back to any known cause like environmental factors, family genetics or diet. The Turner Syndrome Society states that it is a random condition that can be detected in a fetus through a karyotype test. Although about half of those diagnosed are not tested until their teen or pre-teen years. Browne also explains that other difficulties can require Ts patients to need lifelong care.

“Most women with Ts lose their hearing and require hearing aids. Without being able to hear, it is almost impossible to secure employment,” she said.

But with the success of the Loving a Leaping Butterfly memoir, Debbie and Larry found a new vision. In 2012, Larry and Debbie founded an organization called Leaping Butterfly Ministry. Starting with the proceeds from the book, LBM was founded she said, “in blind faith.”

“It took one step and then another with a goal to bring awareness of genetic chromosome condition called Turner syndrome,” Debbie said. “My sweet husband, Larry, helped to supply the funds necessary to file for a non-profit organization and print handouts for awareness.

Now, going into their fourth year, LBM provides support to Ts patients and their families in a number of ways. In addition to providing support, education and resources, they help the girls get hearing aids and other costly medical care, and they also provide scholarships. But most importantly, they assist the young ladies in attending the Annual Conference, which commences this July in Ohio.

“The attendees learn current medical treatments so they are educated in times of examination,” Browne said. “They learn how to interview and job search, how to live independently if necessary, even though many are married. They form support groups.

For minors, parents usually attend the conference as well.

“Parents have an opportunity to attend with their children and learn how best to care for them. The conference is provided by Turner Syndrome Society of the United States, whom Leaping Butterfly Ministry partners with and supports,” she said.

But all of this takes money, of course. Leaping Butterfly is a registered non-profit—relying solely on donations. Its big push is the annual fundraiser, the Seeds of Faith Celebration. This year’s event will be held on February 25, at Belle Rose Maison in the Woodlands.

“At our first gala in 2014 at Carlton Woods Country Club, we had 112 in attendance and raised $30,000.00. The second year we have 92 and raised $67,000.00.”

This year, they expect an even bigger turnout, especially with the new project they have taken on. They have recently sponsored the Echocardiogram Room for the new Texas Children’s Hospital in The Woodlands. This is especially important for Ts patients, because the condition frequently includes cardiovascular issues. In the past, LBM had sponsored a cardiologist at the annual conference to provide free screenings for the girls.

“Many heart conditions have been discovered and treated as soon as they returned. Some have been life-threatening,” Browne said.

The 2016 Seeds of Faith Celebration is expected to be fun and upbeat, with silent and live auctions. Bob Milner, co-owner and general manager of Mercedes-Benz of The Woodlands, will serve as the auctioneer. The event will be Cajun themed, with a Zydeco band, and lots of food.

“It’s been such a blessing to see how the Lord can take a tragedy of losing a child and bless me with more daughters than I ever dreamed I would one day have,” Browne said. “Those with Ts are so grateful for everything we do for them. For way too long it has seemed like no one has cared about this incredible groups of girls and women. So to see them smile, receive a hug, or to read a thank you note brings so much joy to my heart.”

Tickets for the event are priced at $150 per person and can be purchased via the organization's website. Leaping Butterfly Ministry is also offering corporate sponsorship opportunities to alleviate the cost of the fundraiser itself. For more information on sponsorship opportunities or the Seeds of Faith Celebration visit www.leapingbutterfly.org or visit Leaping Butterfly Ministries on Facebook.