Sisterhood Spotlight

Can you tell us a bit about who you are, what you do, and some of the many 'hats' you wear? 

My name is Allison Shelton, and I am a stay-at-home mom to two wonderful boys, Declan (almost 12 years old) and Cillian (10.5 years old), whom I share with my husband Brandon Shelton. We have lived in Midlothian, VA, since July 2019. When our son Declan was born in April 2012, we learned he has the genetic condition Prader-Willi Syndrome (PWS). This was a huge shock to us, as my pregnancy had progressed normally with no apparent concerns. We had never heard of PWS until the day of Declan’s birth, when the neonatologist raised it as a possible explanation for why our new baby was unable to feed on his own and needed to be in the NICU being fed by a tube. We were quickly thrust into a world we had not at all expected – Declan spent his first two months in the NICU as we grappled with all the implications of his diagnosis. PWS (1 in 15,000 births) is a scary sounding syndrome if you search it online; the hallmark feature is “hyperphagia” – insatiable hunger. It is the main reason individuals with PWS are often unable to live independently as adults – access to food must be strictly controlled and their diets must be managed to ensure optimal health. As we learned about all of this, we were also learning how to teach our tiny baby how to drink from a bottle – due to hypotonia (low muscle tone), almost all infants with PWS are unable to successfully nurse or bottle feed when they are born. Declan eventually had a g-tube placed in his stomach so that he could come home from the hospital. Once home, we became experts in administering tube feedings several times a day while also taking Declan to all of his specialist appointments, having Early Intervention therapy services at home, and giving him his nightly injections of Growth Hormone, the only FDA-approved treatment for PWS. This is when I began to don many hats in my role as a stay-at-home mom! I became an amateur nurse, an expert appointment scheduler/juggler, an expert insurance negotiator (it is not easy procuring specialty medications!), and an at-home therapist (practicing everything our Early Intervention therapist taught us!), to name a few! Just as we were settling into our life with Declan, we were surprised to learn we were expecting a second son – we had tried for so long to get pregnant with Declan, that the beautiful surprise of Cillian arriving 16 months after Declan truly completed our family. Over the years, Cillian has often been Declan’s best buddy, his motivator (he actually walked before Declan did), and our constant companion to doctor and therapy appointments. He was like our advance team, sprinting down office hallways and bursting into waiting rooms a minute or two before Declan and I would walk in! He has also provided a much needed sense of normalcy, as Brandon and I couldn’t devote all our time and energy to Declan; Cillian needs us just as much! Our life as a family of four these days quite resembles that of many others – the school routine, the sports schedules and other extracurricular activities – but layered with the intricacies of caring for a child with a disability. 

March is Developmental Disabilities Awareness Month - can you tell us about your family and what this month means to you? 

When you have a child with a disability, especially one that is rare, you quickly realize the importance of raising awareness. You are the expert on your child – we discovered we often knew more about PWS than some of the doctors and therapists! You also learn the value of community. As soon as we heard the words “Prader-Willi Syndrome” when Declan was born, my mom Gail Frey began researching and came across information for an upcoming walk in Washington, DC, (we lived in the Virginia suburbs of DC at the time). She was so taken by what she learned reading through the website of the Foundation for Prader-Willi Research (FPWR) and the information for the DC walk, that she said, “Even if it turns out Declan doesn’t have PWS, I am going to this walk to support this amazing community and its cause to help people with PWS.” Barely a few days later, Declan’s PWS diagnosis was confirmed, and my mom led the charge for creating our first fundraising page. Declan – not yet out of the hospital for that first walk – was the top fundraiser that year for the DC walk. I attended that walk with my parents, while Brandon and his parents stayed with Declan at the hospital. Just a few days later, Declan had surgery to place his g-tube, and finally came home. Ever since that first walk, I’ve become deeply connected to the FPWR community – attending the annual walks and family conferences has given me the chance to meet and become friends with fellow PWS parents. As many of us would say, “it’s a club we never wanted to be a part of, but thank goodness we have each other!” Being with other parents who immediately “get it” is invaluable. I have made so many special friendships that have sustained me through the ups and downs of our PWS life. We are united in our cause to find treatments for our children that will enable them to live independently. This is why I am passionate about fundraising for PWS research, and I co-host the annual Washington, D.C., One Small Step for Prader-Willi Syndrome walk. Raising awareness and funding for research gives us hope that one day Declan and all those with PWS will be able to live full and independent lives. 

Do you have any advice for Virginia's Women+girls who have a child with a developmental disability, or are supporting a family member or friend on a similar journey?

Early on, fellow PWS parents advised us to take it one step at a time, and to enjoy our new baby – to try not to get too caught up in the “what if’s” and trying to look too far down the road. None of us can know exactly how our life is going to unfold, especially years into the future. Enjoy the moments, and also know that so much can change – what might not be possible today (in terms of therapies, medications, other advances), could be possible in the future. Parenting a child with a disability can be all-consuming; remembering to take time for yourself is so important. Even if it is just sitting down with a cup of coffee and listening to a fun podcast for fifteen minutes, that time can help you reset and recharge. If you are supporting a family member or friend who has a child with a disability, offering to meet for lunch, go for a walk, or just be there when your friend needs to chat, is so helpful. Having a moment with a friend can lessen the stress you might be feeling at that time. 

Do you have a favorite motto, quote or scripture that you would be willing to share?

I came across this quote recently which resonates with me: “Embrace the unique way your child is blooming – even if it’s not in the garden you imagined.” The author, Jenn Soehnlin, is also a special needs parent. My life as a mom has not unfolded in the way I might have expected, but I am still on a special journey that has given me the chance to find the joy and excitement in the small – and big! – accomplishments. I have learned to not take anything for granted – when your child with a disability achieves a milestone, especially one that is instinctive to a typical child, it is the most beautiful feeling.

Finally, as a mother of a child with a developmental disability, what is one thing you wish other people knew? Please share what is on your heart.

What we have learned in these twelve years is that while our son’s condition is a serious and complicated disorder, life can still be beautiful and amazing! Declan has persevered through so many challenges and is turning into quite the unique and special guy. Twelve years ago, I never could have pictured he would be thriving in school – in a general education setting – and demonstrating quite the zest for life! Things we didn’t know at birth if he would accomplish – as basic as walking and talking, learning to eat without a feeding tube, and on to reading and writing, have all come to pass. Declan loves music, game shows, has made special friendships with his classmates and peers, practices tae kwon do, and loves swimming and singing! But there are still challenges ahead, as we edge ever closer to adulthood. He talks about going to college and getting married, and having a job. Our dearest hope for him is that he will be able to do all of this independently, and will not be stymied by the challenges of PWS. In our PWS community, we talk about wanting our children to be able to “live life full” – in every sense of the phrase. 

About Allison Shelton

Allison was born and raised in Connecticut, and moved to Virginia when she started college at Washington & Lee University in Lexington. She was a member of Phi Beta Kappa, and graduated magna cum laude in 1998 with a degree in History. Allison moved to the Washington, DC, area, and began working in Public Affairs at NCTA – The Internet & Television Association. She met her husband Brandon during this time, and they were married in 2004. Allison continued in her career at NCTA until the birth of her son Declan in April 2012. She was fortunate to be able to stay home upon his birth and diagnosis with PWS, as she and Brandon navigated their way into special needs parenting. Their second son Cillian was born in August 2013. The boys are currently in 6th and 5th grade, and the family has resided in Midlothian since summer 2019. Allison is active in both her sons’ schools through the PTA, and in her free time enjoys reading, listening to music, walking the family dog, spending time with friends, and relaxing with Brandon while watching a favorite TV show! From visiting favorite museums to strawberry picking at local farms, Allison and her family greatly enjoy taking advantage of all that the Greater Richmond area has to offer!