Learning To Soar With My Superhero
Our story pivots around one precise moment—a phone call one afternoon in May 2016 almost four years ago. Every life event before, and every moment since is redefined now in relation to the information we received that afternoon. The rest of that particular day is a blur, and yet some details are crystalline in my memory.
We were at Sopris Park celebrating our then five-year-old son Jax’s last day of preschool. It was a beautiful, warm spring day, and everyone was enjoying being outside. My mother Claudette Collier, who was visiting, walked our almost-two-year old daughter Addy back to our house near the park, so I could focus on Jax. The leap then between pre-k and kinder felt exciting, even monumental.
Around 3:00 PM, my mother hurried back out to the park. She said she’d stay with the kids. I needed to go talk with my husband Brent. I will always remember the looks on my friends’ faces as everything stopped and I raced home.
We’d been seeking answers about our daughter Addy for seven months. Brent told me what the doctor said: “We think your daughter has 4H Syndrome Leukodystrophy.” I heard the words. I saw Brent’s notes scribbled on a piece of paper… I studied them in disbelief and sobbed for what seemed like hours.
A Little Sister
Our son Jax was born in 2011 and named after my Grandpa Leon. Jax has been a strong kid from the get go – an early walker, riding a strider at 14 months, skiing at age 2½ and ripping on a pedal bike by age 3. Mothers used to flinch when they watched Jax whiz around the playground, but that was Jax, and even though he made me nervous too, we let him rip. I always laugh and say “Jax: scaring moms on the playground since 2012.”
When his little sister arrived, we chose to name her Adele in honor of my great grandmother. She was a woman who lived life to its fullest, whom we considered “way before her time.” She attended beauty school after raising four boys, so she could provide orphans with haircuts. She drove before it was popular for women to drive. She never stopped reading and eating healthily and lived to 99. Our daughter’s drive, her attitude, and her will certainly follow in Great Grandma Adele’s footsteps. We call her Addy.
When you take your second child to their well-check appointments and bring up your concerns, your doctor will likely tell you to give it time, and not to compare the siblings. Yet at 15 months, Addy was not pulling herself up to standing, nor walking or standing without support. She had not cut her first tooth. She made none of the pre-talking sounds you expect by age one.
Friends tried to diagnose her, and although appreciated, it was frustrating. We had to start somewhere, so we started with a pediatric dentist and mouth x-rays to learn that Addy’s teeth were all present. They simply hadn’t come through yet.
Next, we sought help from Dr. Ellen Brooks to understand the developmental delays we were seeing. She gave Addy a thorough examination and a micro-array genetic test, a basic screen to identify or rule out certain conditions. We waited for test results.
IN The Meantime
Dr. Brooks suggested that we contact Mountain Valley Developmental Services’ Early Intervention team. We immediately completed the paperwork and started speech, physical, and occupational therapies. Thankfully our support team worked at our home. Addy needed to get to know three different specialists working with three different treatment modalities, for three scheduled appointments each week, so being at home made a big difference. Consider the time and work this is for an adult, and then think of a 1½ year-old having the patience to sit and learn and be watched.
Through the therapists, I learned ways to help Addy cope with day-to-day challenges. For example, I learned how to support Addy’s positioning, so she could be more stable while standing. We worked together on Addy’s eating and swallowing, using straws to help strengthen the muscles in her mouth. One of the best ideas came in helping to minimize Addy’s frustration when trying to communicate. I made laminated signs of images, such as our dog Oly, Addy’s stroller, our house, swings at the park and even our bottle of almond milk – and these flashcards gave us visual cues that helped Addy show us what she wanted.
We spent seven months investigating Addy’s condition. Genetic tests proved inconclusive, and each little bit of therapy found us asking “what’s next?” Addy was improving slowly but we needed answers, and the paperwork started stacking up. Appointments with pediatricians, specialists, PT, OT and Speech therapy took every bit of our time, while we were still trying to work, raise our children and be good parents.
Finally, A Diagnosis
At age 22 months, Addy underwent an MRI at Denver Children’s Hospital. This meant sedating her, which terrified us. We kissed her and held her hand while she was put to sleep. We waited forty-five minutes until they came to get us as she was starting to wake up. Then, we waited six long days over Memorial Day weekend for Addy’s MRI results. The answer finally came with the fateful phone call when we first heard of 4H Syndrome Leukodystrophy. We immediately started gathering information. Leukodystrophy is so rare that learning about it proved challenging. The specialists at Denver Children’s Hospital had never heard of 4H Syndrome but suggested a single gene test which confirmed the diagnosis later that summer.
Finding Answers, Connection and Experts
My mom and Brent’s parents, Lynn and Gary Moss, scoured the internet for information and found the three foremost experts in the United States. They started calling and emailing them right away. All responded immediately and their sensitivity to our situation was amazing. I also reached out to a client and friend who directed us to CHOP – the Children’s Hospital of Philadelphia – with a center dedicated to all Leukodystrophies.
With the whole family quickly researching and reaching out, we learned of a United Leukodystrophy Foundation (ULF) conference in Omaha, Nebraska at the end of June, just weeks away. The diagnosis was not confirmed by any Leukodystrophy experts at the time of the conference, but our parents, Brent, and Addy attended anyway. I wasn’t ready to face the realities yet so I stayed back to be with Jax. It was helpful for Brent to meet other families dealing with Leukodystrophy. They also met experts who were able to observe Addy, and “unofficially” review her MRI and genetic test results, and confirmed that “yes, she does have 4H.”
The annual ULF conference has become an important component in keeping us updated with advancements and changes, and in connecting us with other 4H families. So our parents make it a point to attend each year. At ULF during the summer of 2018, we visited with one of only two 4H experts in North America. It was wonderful to meet her and her team in person, and have her see Addy after nearly 2 years of long distance treatment.
One of the critical issues with this condition is that Addy’s body cannot handle sickness, broken bones, or any serious injury. She has no reserves to recover from illness, so it can take Addy a month to get her strength back from any “minor” illness. This is terrifying for me and hard for others to understand. Every single time someone enters our home, we ask them to wash their hands. It doesn’t matter if they “just washed.” I don’t take Addy to the grocery store. We skip a lot of birthday parties.
Last Christmas, Addy contracted RSV and pneumonia. She was hospitalized, hooked up to tubes, breathing devices, IV fluids and antibiotics. My sister, Beth Walker, flew in immediately from Florida to help take care of Jax so he didn’t have to be at the hospital every moment. He was so scared for his little sister. We all were.
For weeks after getting out of the hospital, Addy spent 20 minutes 3x per day wearing a chest therapy vest that shook her whole upper body and kept her lungs clear of mucus. Addy was not allowed to go to her preschool or be out of the house for more than a month.
Addy is happiest when she’s outside, playing games, or chasing her brother. But often, playgrounds and other kid-friendly spaces are not accessible with her pediatric walker. Our community rallied around us to help manifest an idea I had shortly after Addy’s diagnosis – to create “Addy’s Oasis.” This is an outdoor adventure area in our yard where Addy is safe, where every aspect is conducive to her needs. I imagined creating pathways, so Addy could navigate the yard with her walker, completely independent of our help.
My brother, Brian Collier, seized the opportunity to help us through the Polar Plunge fundraiser at a beach along the shores of Lake Michigan in Chicago. Anyone can participate in the plunge to raise money for different causes. Brian and my Uncle Danny Deasy jumped into freezing Lake Michigan and a huge group of family and friends came to support them and we celebrated with a party afterward.
In addition to the amazing individual efforts from friends and community members, two local businesses stepped up to help with things we could have never done without them. Todd Merriam and his team from Aspen Valley Landscaping started the installation process with their equipment and team work. Jake Boyles and the crew at Crystal River Spas helped make one of our most cherished activities come to fruition with a hot tub that they installed and continue to service for us. Start to finish, the project took six weeks and now our yard is easily navigable for Addy. She can do things other kids do, while utilizing the medical devices she requires, like her walker. Addy now has a therapeutically supportive haven to play independently with her friends, and to grow and nurture her love of the outdoors.
Addy loves to be around other children. But sometimes, meeting new people can be awkward. I jump in and encourage people not to be afraid or intimidated by her or her walker. When we are out some people stare with curiosity so I politely introduce them to Addy and tell them her sign language name to break the ice. If you’re ever in doubt, just smile, look her in the eyes, and say “Hello.” She appreciates this just like everyone does. Just know that Addy tends to get overwhelmed easily and it can get hectic for us in a hurry – so if we scoot away, don’t take it personally. We’ll try to play again soon.
The Little General
Addy’s nickname is the “Little General” because she can direct anyone with her sweet “come here” gesture. Her sparkling blue eyes are so expressive that sometimes she doesn’t need words to who you how she feels. However, this gift cannot fully compensate for the fact that Addy has never talked. She communicates mostly with sign language and gestures. We realized early on that Addy was gesturing to communicate, effectively creating her own sign language. So we started to use YouTube and American Sign Language (ASL) apps to learn more standard sign language so we could actively teach her to communicate in ways that other people can understand.
Two years ago, the speech team at Children’s Hospital assessed Addy’s language and communication. Addy sampled four devices to see which one worked best for her. She now uses an iPad with TouchChat software to help her communicate, though her preference continues to be signing.
While we were at Powers Lake in Wisconsin during the summer of 2018, I found an amazing caregiver, Michelle Clark, who lived in the next lake town over. She teaches sign language at a local school for the deaf. Addy enjoyed Michelle’s company and adjusted to the new sign language immediately. We brought 40 new signs home with us that summer when we returned home!
After seeing how much Addy benefited through her relationship with Michelle, I began to search for another angel caregiver, and we found Ali Wade. We call her “Miss Ali” and she has become Addy’s friend, caregiver, and teacher. To have found two people whom I trust completely to take care of Addy is a blessing.
Going to School
When Addy turned three, she aged out of early intervention services, so she enrolled in preschool two-half days a week to see how she liked it and to receive the necessary therapies through the public school environment and its Individual Education Plan (IEP) process. This was a wonderful opportunity for Addy and she grew so much.
When Addy was ready for kindergarten, her IEP meeting was the second largest the district has ever had. Their dedicated approach to getting to know Addy, making her feel welcome and comfortable, creating an infrastructure where Addy could use her walker easily and safely – it’s all something we never imagined. Even the students went above and beyond. The kids came over to help us build Addy’s Oasis, and played with Addy to get to know her better, just because they wanted to.
The CCS kindergarten walls have laminated ABCs posters that not only show letters and pictures, but sign language as well. The teachers are using sign language in classes now, and some classes are singing songs and signing along during school performances. Recently, Addy’s classroom paraprofessional Lori Westhoff, Ali Wade and I completed an eight-week ASL course and learned over 200 signs. It’s a beautiful thing to watch the other kids at CCS learn Addy’s language and I hope to see that grow in the years to come.
Our New Normal
I’m often asked what it’s like on a daily basis to just get through the day. That’s a tough question to answer, because every day brings something new, whether it’s a family thing, or something that’s needed for an upcoming appointment, school, paperwork, doctor or therapy visit. What I can say is this – now, I am able to talk about our joys, challenges, and what it took to get where we are today. I get to share how Addy is thriving and living life to the fullest. No one could have felt more overwhelmed than we did – and now, here we are living our “new normal” life that seemed impossible three years ago. It’s never easy, it’s never what’s expected, but it is our life as a family and we continue to live it to its full potential every day.
Addy is a superhero even without wearing a special superhero suit or having a rare disease. She’s growing by leaps and bounds, and learning new things all the time. Here’s her latest superpower: after sleeping with us for five years, Addy now sleeps in her own bed. She shares a room with Jax and they both love it.
Speaking of heroes, Jax has never asked what’s wrong or what’s different about Addy. He’s just accepting of who his sister is, and he loves and treats her with respect, love, and care – with the occasional brother sister fight (which can feel refreshingly “normal!”)
Each May, I relive every little detail of that first phone call. No one expects to find out that their child has a rare and devastating disease. When I look back, it feels like I was dying and in a sense I was. With leukodystrophy, there are so many unknowns. How long will Addy be mobile? How long will she be able to enjoy parties and events? And even how long she will be with us on this earth? There are no answers, so as her biggest advocates, Brent and I feel our mission is to give our little angel a life of happiness and love that she deserves. We are her world – we’ll do whatever it takes to ensure happiness in her lifetime.
I try not to get stuck in the grief, sadness, and overwhelming nature of caring for a child that needs so much. Instead, I try to focus on the positives that have unfolded since that day, and how far our little girl has come. She’s truly an amazing person. She works harder than anyone I know. We’re blessed to have her in our lives, and she makes us better human beings. In a way, I like to think that Addy might turn me into a Superhero too.