The day my son Alex was born was both one of the happiest and most terrifying days of my life. He had big blue eyes, beautifully smooth skin and a face so familiar to me that I knew instantly I’d seen it and loved it before – his older sister. He also had arms that were not full length, hands that turned inward in an unnatural direction and only four fingers on each hand. When I asked the doctor what was wrong with his arms, she answered, “I don’t know” as she reached for the phone in the delivery room and dialed for help.
The room quickly filled with doctors, conferring with one another, examining my son and making calls. More and more tests were ordered to determine the depth of the problem. Limbs develop in utero at the same time as all major organs, so there was a huge concern about additional complications. Over the next few weeks, Alex underwent a battery tests and was eventually diagnosed with a rare skeletal disorder known as Holt-Oram Syndrome. The next five years of his life, and ours, were filled with doctor’s appointments, research, surgeries, splints, casts and occupational therapy – all with the goal of Alex starting kindergarten with his peers.
There was endless worry throughout our journey. What would Alex’s life be like? Would he ever be able to reach his mouth to feed himself? Would he be able to care for his own hygiene? Would he be able to write? Would he have friends and be able to participate in normal “kid activities?” And, of course, would he be able to dress himself independently?
Fast-forward sixteen years and meet the most incredible young man I know. Alex is a popular, outgoing teenager with a contagious smile and an unbreakable will. One by one, Alex dispelled our fears by overcoming any challenge he faced. In addition to mastering the daily life skills that concerned us when he was an infant, Alex plays basketball, rides a bike, drives a car, writes and draws, skies, skateboards, swims, kayaks, surfs and will try anything else that is presented to him. He is steadfast in his determination and does not let his “limitations” limit him. However, since he cannot manage buttons, the simple task of dressing himself continues to be an obstacle.
Like most teens, Alex has his own style and likes to dress in all the latest trends. For us, this means having his clothes tailored to fit him appropriately and having all buttons replaced with Velcro (a less than perfect solution). That’s why Runway of Dreams’ vision for adapting mainstream fashion is a life-saver for Alex and millions of other people around the world. As more brands join the inclusive fashion movement, there will be more and more options, not only to meet people’s needs, but also their individual style.
Alex will be headed off to college in a little over a year and hopefully by then he’ll have a closet full of clothes to bring that will provide him with the confidence, independence and style he deserves. Thank you Runway of Dreams!!!!
A proud mother of an extraordinary kid