SMA Does Not Define Our Boys

SMA Does Not Define Our Boys
SMA Does Not Define Our Boys
Fraternal twins, Dallas and Dylan Moore were born November 29, 2011 to Dwight and Tiffany Moore. Dallas is the oldest by six minutes and during the first few months the boys developed at what would be considered a normal rate. At six months Dallas and Dylan were able to sit unassisted and had good head control. At ten months Dallas began to “army crawl,” one of the first methods of moving around for most babies and could pull up on his knees into a crawling position. Dylan crawled at six months and was pulling up to stand at eight months. At this point things, began to change for the boys and their family. With twins, it is essentially impossible for parents not to compare each child with the other. “For a while we thought that Dallas was just an easy-going baby compared to Dylan who was very outgoing and active,” Tiffany said. “But when Dylan began to crawl, pull up and cruise around furniture I began to be very concerned because Dallas couldn’t do these same things.”

The twins’ mother was particularly qualified to take note of potential developmental problems in her young boys. Her younger sister Nicole, who was also a twin, had died from Spinal Muscular Atrophy (SMA) Type 1, a genetic disease, at age 10. SMA is considered by many as one of the most prevalent genetic disorders and is the most common genetic cause of infant death. Spinal Muscular Atrophy Type 1 onset usually occurs between birth and six months old. SMA Type 2 is an intermediate form that affects children who are never able to stand and walk but who are able to maintain a sitting position at least some time in their life. The onset of weakness for Type 2 is usually between 6 and 18 months; however, experience with the disorder varies greatly. Some individuals gradually grow weaker over time while others through careful maintenance void any progression. Body muscles are weakened, and the respiratory system is a major concern. Life expectancy is somewhat reduced but many with SMA Type 2 live well into adulthood. Late onset SMA, also known as SMA 3 and 4, result in variable levels of weakness in older individuals. “It was obvious to us that Dallas’ muscle tone was very weak and his hands often trembled,” Tiffany said. “However, when I shared my concerns with our pediatrician I was told that I was only comparing Dallas to Dylan and that he would be fine. I knew deep down that something wasn’t right and changed to a different pediatrician.” During this time Tiffany began to learn more about the symptoms of SMA and from her findings determined that Dallas’ symptoms were very similar to those identified with SMA Type 2. In a few months this baby who earlier could roll over and army crawl was losing strength in his muscles.

In February of 2013, a neurologist formally diagnosed Dallas with SMA Type 2. The twins’ parents became somewhat concerned about Dylan when at 14 months old he was not walking unassisted; however, otherwise he was very mobile and was not exhibiting the symptoms identified with SMA as Dallas had. “Through early intervention services Dylan had been receiving physical therapy for about six months and I asked his doctor if he would order more,” Tiffany said. “After asking some routine questions and learning about Dallas’ SMA diagnosis, the physical therapist suggested that Dylan see a neurologist to rule out other factors. Further examination and genetic testing confirmed in December of 2013 that Dylan also had Spinal Muscular Atrophy Type 2. The boys’ father is a high school Math teacher, and their mother teaches Special Education at the high school level. “As educators, and especially with my experience in special education, we have been diligent to seek help for the boys wherever possible,” Tiffany said. “We have been with Alabama’s early intervention services since right after the twins’ first birthday. I recommend that parents of children with disabilities reach out for help in your area as soon as you think there might be a problem.”

Tiffany pointed out that often a family member or friend will notice symptoms before a parent. “The earlier you begin to get help the better because you need to learn what your child needs and how to get it.” Without a doubt, Tiffany and Dwight understand how difficult it is to meet the challenges of having children with disabilities. “It is very difficult to accept having a child with disabilities and then make that ‘times two’ with us. As parents we all have in our minds how things will be. It is very difficult when what you envision for your child doesn’t come to fruition and you realize something is wrong,” Tiffany said. “It is important not to be afraid and not to blame yourself. Mothers often worry that they did something wrong during the pregnancy. Even when I doubt myself I know this situation is what God has for me. I believe my experience with my sister and her disabilities was, in a way, God telling me, ‘this is for you to learn because I’m going to give you two children with SMA.”

And now Dallas and Dylan have started Kindergarten. “Actually the boys are kind of pros at school now. They began with early intervention services at the age of three and at that time began riding the bus to school,” Tiffany said. “Now they ride the bus to Kindergarten. We don’t have an accessible van so we have no way of transporting two power chairs.” Dallas has had a power chair since he was three years old. Until recently Dylan used a manual chair, but he now has a power chair as well. The Moore family has determined not to let SMA define their twins. “We want them to have the fullest life possible regardless of their limitations,” Tiffany said. As with any five year olds, the twins are developing individual personalities. “Dylan is all boy and crazy about super heroes,” Tiffany said. “He has a big personality, can be stubborn at times and is very particular about his school work. When Dylan will say something new and I ask him how he knows it, he’ll answer, ‘I’m a genius!’ He can be a dare devil in his chair and we have to keep a close watch on him. The boys recently got bunk beds and we caught Dylan about to jump from the top bunk.” Dallas’ mother describes him as an observer. “While Dylan doesn’t meet a stranger, Dallas will check out every detail before he warms up to someone,” Tiffany said. “But once he’s comfortable, he’s a little chatter box. Dallas pays close attention to what’s going on and then gives you a run down from beginning to end. He also gives lots of hugs!”

Both boys love to choose their clothes and while Dallas prefers bow ties, Dylan is partial to anything red. “At one time you could pick out Dylan because of his red shoes, but he’s grown a little faster than Dallas so now his brother is the one wearing ‘hand-me-down’ red shoes,” Tiffany said. “We are trying to do a better job of not being over protective of the boys. We can’t always shield them and they have to learn to live in the world,” Tiffany said. “One night Dylan made a comment about not being able to walk and I went into his room to talk to him. That boy was looking at me like ‘What is she doing in my room?’ I asked if he wanted me to leave so he could go to sleep and he said, ‘Yes ma’am!’ Here I am worrying and crying and Dylan is over it!”

However, Tiffany grew solemn as she admitted that she often thinks about the challenges her sons will face as they grow older. “We think about that a lot. The older they get, the more the boys realize they are different. They will say things such as they wish they could stand. Dylan asked me if he would be able to walk when he got in kindergarten. There are many difficult times ahead and it is heartbreaking. I don’t lie to them. I tell them they are different and they may not can walk, but they can do other things. Dallas and Dylan are very bright boys! Our goal is for them to continue to be happy and for us to live in the moment. I see and read about many older kids and young adults living with SMA. That gives me a glimmer of hope.”

There is also hope because of the recent availability of a treatment approved by the FDA in 2016. “The boys received their first Spinraza treatment this past summer and will receive a maintenance dose in December of this year,” Tiffany said. “We’ve seen some progress already. Dylan could initially stand and crawl up stairs but he lost that ability. After this treatment he can crawl up and down stairs again. Dallas has gotten much stronger. He can now roll from side to side and pick up his cup from the cup holder in the car. Even Dallas’ handwriting has improved. I was concerned about that. It wasn’t that he couldn’t write he just wasn’t strong enough to produce it. Now you can see the improvement.

This is very encouraging to us!” For this family’s journey thus far and all that lies ahead, they are especially thankful for the care and encouragement they receive from others. “I want to emphasize that we could not cope with all that is before us if it weren’t for the support of our family and friends,” Tiffany said. “My mother and sister live near and take the boys every other weekend so Dwight and I can have some time to rest and focus on other areas of our lives. This gives us an opportunity on a regular basis to recharge physically, mentally and emotionally. My husband’s mother doesn’t live near, but helps us financially even though she doesn’t have to. We also have a strong faith in God and believe that He blessed us with Dallas and Dylan for a reason. He chose us for them and them for us. We can’t imagine our life without them!” Contact: The Moores may be reached at tiffanycmoore03@gmaill.com

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