Jeff Horton is a Dad. But he’s not just any Dad — he’s a Fighter Dad. After his daughter, Evie, was diagnosed with Spinal Muscular Atrophy (SMA), Jeff became proactive in getting the word out about the disease. SMA, as you might know, is the number-one inherited killer of children under the age of two.
In April 2009, Jeff attended his first FightSMA Annual Conference in Washington, DC, and participated in the annual Capitol Hill Day. You can see him to the right with Congressman Gregg Harper of Jeff’s home state of Mississippi. In preparation, Jeff did some work “in the field” back home in order to gain the support of his Members of Congress. He had one goal: to get all of his Members to sign on as cosponsors for the SMA Treatment Acceleration Act.
Jeff agreed to share his experience with FightSMA and our blog readers.
FightSMA: Tell us your story.
Jeff: Our little girl, Evie, has Type 2 Spinal Muscular Atrophy. At 12 months old, Evie could stand and walk with assistance holding onto toys or cruising furniture. At 18 months old, she had not progressed to walking unassisted so we called our pediatrician. After a visit to an orthopedic doctor, which went really well, Evie suddenly quit putting any weight on her feet. We took her to a neurologist who determined she was hypotonic and referred us to another neurologist who had more experience with muscles disorders. In June 2008, we received the official diagnosis of SMA. We were devastated and overwhelmed.
Three months prior to the diagnosis we had our second child, Jake. So now we had to face the possibility that our second child also had SMA. He was tested in September 2008, and his results were negative. Praise the Lord! This was about the time we had turned the corner of grieving, and were facing the challenge of figuring out what to do for Evie.
Also in September 2008, Evie began Physical Therapy once a week, started wearing AFOs [ankle-foot-orthosis] at night to keep her feet aligned correctly, and started wearing KAFOs [knee-ankle-foot orthosis] during the day. The braces have been wonderful for us. It was a slow start with Evie, but she now loves them and asks to stand! We are also working with Evie on walking with a walker while in her braces. She can walk about 10 feet. It’s been a slow process, but we are persevering. Evie and Dee were featured in the local MDA Telethon to raise awareness of SMA and to help people understand the disease and what we (SMA families) are going through.
We began networking with other SMA families and quickly learned that SMA was a very complicated disease. We wanted Evie to be seen by doctors that know the disease and know how to treat it. We drove to St. Louis to meet Dr. Connolly and investigated if Evie should participate in the Sodium Phyenulbuturate Drug Trial. We decided it was not the best thing to do for Evie at that time. We took Evie to a holistic doctor to see if there were things we should do for her diet and/or supplements that she might need to take. In May 2009, we took Evie to Utah, to see Dr. Kathy Swoboda.
We have had several rummage sales and donations to cover the cost of traveling to Utah. The visit was well worth every penny. While in Utah, we discovered a manual wheelchair that Evie could push by herself. After working with another SMA family to order this chair, we received it. Evie loves it! She is now able to move around and be independent. In June 2009, Evie started Valproic Acid and Carnitine. She is doing really well. We haven’t seen any new strength, but we haven’t seen any negative results either. We have joined the patient registry. We participate in water therapy and swim classes once a week. Evie loves the water. She can move her body so freely in the water. I went to Washington D.C. to the FightSMA Conference in April. It was a positive experience for me. As a result of the trip, we gained 3 new co-sponsors of the SMA Treatment Acceleration Act. Right now, we are waiting on a power wheelchair and a cough assist machine.
FightSMA: When did you first decide you wanted to become proactive in a grass roots way?
Jeff: We started last summer by emailing friends and family about the petition. When I saw the congressional sponsor list for the SMA Treatment Acceleration Act and noticed only one congressman from Mississippi (and he was not running for re-election), I felt I had to do something. I wanted to make sure my senators and representatives know about SMA, and I wanted get their support. I knew they would support SMA if they were made aware of the situation SMA families are in.
FightSMA: What was the first step you took towards energizing your community?
Jeff: My wife, Dee, went to Jackson Academy, where she used to teach, and talked to the elementary and middle school about Spinal Muscular Atrophy. This generated unexpected and generous support from the children and families of Jackson Academy. They offered their facilities for our first rummage sale and did their own fundraiser for Evie. One of the children at the school that was touched by Evie’s condition asked her father to help me with my trip to Washington DC. He is a professional lobbyist. He contacted me and offered advice and help. He had an established relationship with the Congressmen I was going to see in Washington and talked with them about SMA and Evie before I went to DC. This was a tremendous help with getting my message across.
FightSMA: What were the subsequent steps?
Jeff: Caroline Gibson at Fight SMA helped me create a petition for people to sign that I could take to D.C. with me. Instead of Dee and I going out and collecting signatures, we handed out the petitions to friends and family, and they collected signatures. Students from the local college where I work also collected signatures. We gathered more than 700 signatures in a short period of time. We felt like we reached a broader base of people doing it this way. We also found people who knew our political leadership and they contacted them on our behalf all because of the petition that was presented to them. We also collected letters of support for me to take to D.C. I wanted to get letters from people the Congressmen might know and respect because this may be the first time they had heard of SMA or the Treatment Acceleration Act. We got letters from six mayors, hospital administrators, doctors, researcher, police chiefs, the president of the college where I work and Mississippi’s Lieutenant Governor. This was a great way to spread the word about SMA to each one of these people and their offices. We felt like a key strategy was to find people that your Congressmen know and trust to support your message about SMA.
FightSMA: Tell us about your trip to Washington and your experience on Capitol Hill.
Jeff: I had a great trip to D.C. The conference had a very good research presentation, and I like [FightSMA Scientific Advisor] Chris Lorson a lot. There were a lot of great families there that I learned from, and I had a great one on one visit with Dr. Schroth. The next day I met with Representative Gregg Harper. We had a very heartfelt, emotional meeting. There is no doubt he understands our pain and wants to help us anyway he can. I met with Senator Wicker’s Legislative Director. Senator Wicker has been a big supporter of Muscular Dystrophy and now he will be a supporter of SMA and the treatment act. I was scheduled to meet with Senator Cochran, however he couldn’t meet with me at the last minute. A few days later when I was back at work Senator Cochran called me personally and said he would sponsor the act and support Evie any way he can.
FightSMA: What has your experience with FightSMA been like?
Jeff: Caroline Gibson and Heather Lennon have answered all of my questions and have been very responsive to everything I have asked of them. I feel like I can call on them at anytime for anything. Martha Slay is an example for all of us on how to fight for our children and move toward a cure for them.
FightSMA: What are your “next steps”?
Jeff: I would like to get August declared as SMA Awareness Month in Mississippi. Since my trip to Washington D.C. I have contacted and received communication from Representative Bennie Thompson that he will support the SMA Act. I hope to get the other two Mississippi Representatives to support the Act as well. We will have a few more fundraisers this year to raise money for Evie’s needs. Then I want to plan out the most effective way I can help get a treatment to Evie and all of our SMA children. Doing these things is outside of mine and Dee’s comfort zone. We do not like talking about our problems and asking people for help, but Evie inspires us with her determination and positive, happy attitude to fight for a cure for SMA and to fight hard!
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We thank Jeff for sharing his experiences, and for his hard work on behalf of the SMA Treatment Acceleration Act. To learn more about the SMA Treatment Acceleration Act, click here. You can indicate your support for the Act by clicking the banner below and signing the Petition to Cure SMA.
