In honor of Rare Disease Day (February 28), here’s a long overdue update on Stanley, whose many health issues stem from his initial diagnosis with the rare liver disorder biliary atresia. Only about 300 babies–one in every 15,000 births–are born with biliary atresia in the U.S. each year, and the disease, which is caused by improper development of or damage to the bile ducts in the liver, can be fatal if left untreated.
Stanley’s symptoms started with jaundice and low weight gain. After a series of tests were conducted to determine that Stanley indeed had biliary atresia, he underwent the Kasai procedure at 9 weeks old. Unfortunately that surgery did not repair the damaged ducts, leading to continued weight loss and jaundice, so he was listed for a liver transplant at 5 months old. Three weeks later, a cadaverous organ became available thanks to one family’s selfless donation of their child’s liver, and Stanley was given a new chance at life.
Because Stanley spent much of his post-transplant recovery intubated in the ICU, he lost his ability to eat and drink by mouth and his physical development was stunted. He was fed via NG tube for nine months until he finally was able to eat on his own. Now at 7 years old, Stanley still struggles with feeding issues, for which he received extensive therapy until recently when he was discharged due to showing very little improvement. He currently consumes only pureed foods, toddler formula, and baby cereal by mouth and must be spoon fed by an adult to get all the nutrition he needs.
Stanley also has autism, for which he undergoes about 15 hours of ABA (Applied Behavior Analysis) therapy per week, and is nonverbal so he receives speech therapy and communicates via a tablet device. In addition, Stanley has cerebral palsy, which affects his ability to walk on his own, so he uses a walker to get around and takes physical therapy to help with his build his strength and coordination. He wears orthotics on his feet as well.
Lastly, Stanley wears glasses due to aphakia caused by cataract removal in both eyes when he was 3 months old. The cataracts developed because Stanley has a mutation in the BEST1 gene, which can also lead to retinal issues down the line.
Despite all of these hardships, Stanley is a happy and healthy kid. He loves books, music, lights, and the outdoors. He’s very social and affectionate and his smile brings joy to everyone he meets. We are so lucky to have been blessed with such a sweet and beautiful boy.
Another thing we’ve been fortunate to have is the nonprofit organization Children’s Organ Transplant Association (COTA). Over the past six-plus years, COTA has assist Stanley with transplant-related expenses thanks to bountiful donations from family, friends, and strangers. COTA funds have been used to cover transplant-related expenses like doctor’s appointments, medications, and hospitalizations to therapy, glasses, orthotics, and other expenses. We have now depleted the original total of $59,913 raised by our initial fundraiser and are once again relying on the kindness of anyone who is able to contribute.
If you have the means, we are asking that you consider giving any amount to COTA for Stanley G to assist with transplant-related expenses by going here. COTA stands ready to assist Stanley for his entire life. We truly appreciate your generosity and are extremely grateful to COTA for providing this essential service, which has been a financial godsend to our family.