Kevin And Clint Black’s Fight Against Rett

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Sitting in the living room of Michael and Kenna Seiler’s home in The Woodlands feels comfy and welcoming. Eleven-year-old Ethan sits at his computer as Michael returns from an afternoon run, and from just around the corner the sounds of a toddler’s song, “If You’re Happy and You Know It,” drift through the house. Everything seems normal. But the child whose face lights up at the cheerful sound of the repetitive lyrics is not a toddler — Rachael is 7 and cannot clap her hands or sing along. She is a Rett syndrome “Silent Angel” and one of the many reasons Kevin and Clint Black are dedicated to helping fund a cure for the devastating neurological disorder.

Clint Black and his brother Kevin share a bond beyond their brotherly love and passion for music. Kevin lost his 16-year-old daughter, Cortney, to Rett syndrome and since that time the Black brothers have been actively pursuing every opportunity to expand awareness of this often-misdiagnosed syndrome.

Kevin Black’s daughter, Cortney, and Rachael both started out as healthy full-term babies; it wasn’t until months later that family members of both girls started mentioning what the parents already knew — their daughters weren’t progressing normally.

Kenna and Michael started a long, frustrating medical journey of false assurances and a process of elimination to rule out Angelman’s Syndrome and other disorders that mimic Rett syndrome. Rett affects about 1 in 10,000 female births. Early on, atypical hand motions are a telltale sign of the disorder. Finally, at Texas Children’s Hospital, clinical findings, confirmed by a blood test, validated a diagnosis of Rett.

Cortney, Kevin’s daughter, also diagnosed at the Bluebird Circle Rett Center at Texas Children’s Hospital, was the youngest girl at the time to be diagnosed.

The Seiler’s remain positive and Kenna’s advice for newly diagnosed families is uplifting. She tells them they will smile again.

Although Rachael’s food must be pureed, she can only communicate using a visually activated Dyna-vox speech device and cannot walk, she still “has her wings.” She also loves the Wiggles, Elmo, pudding, her Nanny Marissa, and her big brown eyes radiate joy when she sees Ethan.

The Seilers, Kevin and Clint will continue their efforts until Rachael, and every child with Rett can sing along and clap their hands to even the simplest childhood songs.

To help spread the word, Clint Black and Dr. Jeffrey Neul, a researcher at the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital, participated in a national media tour a few weeks ago to discuss Rett syndrome. Marking October as National Rett Syndrome Awareness month, the 2 men shared information with journalists from around the country, including how the disease is often misdiagnosed. Dr. Neul is one of the country’s leading physician-scientists involved in treating and researching Rett syndrome, the only autism-spectrum disorder with a known genetic cause. As the world’s first basic research institute dedicated to childhood neurological diseases, the NRI is at the forefront of studying Rett syndrome. For more information, please visit rettsyndrome.org or nri.texaschildrens.org.

About Connie Strong, Volunteer

I am a volunteer for the "Spending Time Ending Rett" campaign and the Blue Bird Neurology Clinic at Texas Children's Hospital.

Posted in Community, Neurology, Parenting, Research

One Response to Kevin And Clint Black’s Fight Against Rett

  1. Brenda Corn says:

    I saw Clint Black on the Drs program on whiched aired on Jan 27, 2014. I appreciate so much the effort to make people aware of Retts. It is always shared that Retts is a disorder that affects girls. I disagree……my little boy had Retts. He was diagnoised when he was 11 months old. At that time I was told that he would not survive past 2 years old. He could not sit, could not roll over, or stand but he spoke volumes with his eyes. He had a trach and was vent dependent, and had a gtube for nutrition. RayRay passed away May 28th 2013 at 7 and half yrs old. As you know, it is heart breaking. Now what I need to share with you. Please Please Please do not keep leaving out that little boys can also be affected by Retts. There are probably more boys affected than we know but they are not tested because everyone assumes that Retts is for girls. Who knows may be the knowledge about little boys could help little girls. Make the awareness of Retts for every child. My little guy deserves to help others. If you would like to contact me please do. Phone number 803-547-5911. You had a concert in Rock Hill, SC in Aug. I live in Frt. Mill, SC and I almost contacted you while you were here but the loss of RayRay was too new for me. RayRay’s genetic testing was with Greenwood Genetics in Greenwood, SC. RayRay also saw Dr. Percy in Birmingham, AL. My voice is not silent about Retts but there are boys with it. Thank you and keep on doing the good work.

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