In 2008, Ed and Trish along with their three children, prepared to welcome a sixth member of their family into a household they describe as “exhaustingly fun.” On July 15th, Alyssa Grace was welcomed into the world with open arms. Trish remembers holding her for the first time and thinking, “she didn’t feel like the 4lbs they claimed her to be; she seemed so fragile.” Little did they know then, just how delicate her life was.
After a brief moment in her mother’s arms, Alyssa was whisked away by the hospital staff. Even though the nurses reassured them that their daughter would be back in just a few hours, Ed and Trish felt like it was a lifetime. When they saw her again, she was in the NICU; her tiny body overwhelmed by wires and tubes. Shortly thereafter, they learned that she needed to be transferred to the Children’s Hospital of Philadelphia for more extensive care due to her breathing difficulties and possibly something more...
Two hours felt like a lifetime...but the two days at the Children’s Hospital of Philadelphia felt like an eternity as they waited for the final genetic report confirming a diagnosis - Trisomy 18. Trisomy 18 (T18) is a rare chromosomal disorder that occurs in one out of every 7,000 live births. The disorder results in growth deficiency, feeding and breathing difficulties, and developmental delays. The term “incompatible with life” was the description assigned to T18 by the medical community. Alyssa’s parents felt the weight of these words as they prepared to take their precious new baby off of the breathing tube that was giving life to her fragile body. Knowing that Alyssa was only expected to survive a couple of hours after removing life support, they “grieved like they never imagined they could or would have to in their lifetime.”
On the day that was expected to be her last, Alyssa did the unthinkable, the remarkable -- she not only survived...she thrived. Within an hour of having her breathing tube removed, she continued to breath on her own and even drank from a bottle! All her major organs were functioning, not shutting down as predicted. However, as Ed and Trish prepared to take their tiny daughter home after a week in the NICU, the hospital geneticist cautioned them not to get their hopes up and explained, “Half of the infants with this condition do not survive beyond the first week of life. The median lifespan is five to fifteen days. Ninety percent of infants do not survive their first year.”
Trish describes the first days and weeks home from the hospital as tenuous because “it felt as though we were living in suspended reality waiting for Alyssa to die.” Trish spent ninety percent of her day holding Alyssa, refusing to put her down because she was unwilling to let her precious child die alone -- apart from her mother’s arms. At that point, Alyssa’s life was measured in days and her family was sure to celebrate each and every one.
By Alyssa’s first birthday, she had defeated a life threatening respiratory infection, overcome a serious systemic infection, and persevered through three surgeries. Needless to say, Alyssa’s first birthday was a momentous celebration of the 365 days they got to spend and cherish with their little girl.
In a short eight years, Alyssa has undergone eighteen surgeries. Many of these surgeries have been related to her expandable titanium rib -- a prosthetic device used to treat her thoracic insufficiency syndrome: a congenital condition resulting in severe deformities of the chest, breathing difficulties, and deficient lung growth and development. Every six months, Alyssa requires surgery to adjust the device. This adjustment expands her chest and straightens her spine, helping her young frame to achieve normal growth. These surgeries will continue until she reaches full growth potential.
Getting Alyssa to her bi-annual surgeries, not to mention her ever-constant doctor appointments, is a huge challenge for this incredible family. Because of her prosthetic rib, she cannot be lifted under her arms, but instead, scooped up and placed delicately in her car seat. Even the smallest turn or bump in the road can cause pain. This routine is completed and reversed each and every time her destination is reached…but, if Alyssa could sit in her wheelchair while travelling, her body would be supported and able to recline without pain, a position most of us can easily take for granted several times a day.
With a wheelchair accessible van, Alyssa would also be able to travel with her brothers and sisters again -- a luxury taken away by the medical equipment and devices she requires for travel. Just like every little sister, Alyssa loves watching and cheering on her older brothers -- but she often misses out on their baseball games because of the obstacles inherent in transferring her in and out of family vehicle. Situations such as transporting Alyssa make it difficult at times to see past the limitations that are a result of her diagnosis.
Thankfully, there is an online community of people that don’t see a diagnosis, but rather, a little girl who wants to make memories with her family. They see Alyssa for exactly who she is - an eight-year-old daughter, sister, and friend that wants to be an active participant in the world around her. This community sees all that Alyssa is, and all that she can be. As a result, their generous donations were used to provide a $48,000 grant for a wheelchair accessible van.
Ed and Trish were told that if Alyssa were to survive, she would be in a vegetative state-- she wouldn’t know her parents and would not relate to the world around her. That couldn’t be further from the truth. Despite the threat of death being present in her days, Alyssa has and continues to astound doctors, friends, and family with her remarkable resilience. Now, because of her new van, Alyssa gets to share her infectious smile and tenacious spirit with everyone she meets as she shows the world that individuals with T18 are not only surviving, but thriving!
Learn more about T18 HERE.