The moment Will was born our lives changed forever. He faced many complications at birth, such as craniofacial anomalies, breathing and swallowing difficulties, and failure to thrive. As a result he was admitted to our local NICU for further evaluation.
We decided to transfer his care to Boston Children’s Hospital, a three hour drive from our home, where a team of specialists in the pediatric aerodigestive clinic immediately gave him oxygen upon seeing him, which ultimately saved his life. He was admitted to BCH where he was evaluated by more specialists than we ever thought possible. Will underwent the first of many modified barium swallow studies (MBS) in Interventional Radiology indicating aspiration was happening when he swallowed liquids. This meant that he was unable to eat or drink anything by mouth because his lungs were being damaged, even by his own saliva. An NG-feeding tube was placed in his nose for six weeks with the hope that proper nutrition, growth and development would improve his condition. After no significant changes occurred, Will had a G-tube placement surgery, which eventually led to a GJ-tube, the safest and most permanent form of tube feeding for him—the difference being food going directly into the stomach vs. the intestines.
Will was 6 months old when genetic testing through BCH was completed that we finally had answers— CHARGE Syndrome. Due to a mutated CHD7 gene, the absence of semicircular canals in his ears, and the slew of other physical indicators he presented, Will was diagnosed with CHARGE syndrome, a rare condition that impacts 1 out of 10,000 people. That was when the real journey began for Will and for our entire network of family and friends who rallied behind us for the WIN!
For the first five years of Will’s life, our house felt like it had a revolving door of early intervention providers coming and going all week long in Occupational Therapy, Physical Therapy, Speech, Special Education, and Teacher of the Deaf services. Will began learning American Sign Language which has drastically helped him with expressive communication and language development. His early years also included frequent visits to BCH for routine appointments, outpatient procedures, CT scans and X-rays, sleep studies, and follow-ups in almost every department you could ever think of. Now, his specialized educational placement meets his cognitive and medical needs daily. Due to moderate hearing loss, he wears hearing aids with an FM system to help him learn in his Deaf and Hard of Hearing classroom. Will also attends a six week, full-day summer program to meet his needs all year long. It helps that he adores seeing his school bus driver and bus aide every morning and afternoon.
Will proves to be one of a kind! He has been skiing through an adaptive winter program in the Adirondacks at Double H. He enjoys historical fiction “Who Was?” and loves learning about the English royal family. He appreciates family moments and summer vacations on the Cape. He gets silly with his little dog, Lincoln, who loves him just the same! Will has a curiosity for just about everything under the sun and keeps those around him answering questions all day long. Best of all, Will has a strong personality with a genuinely empathetic heart.
More recently Will has improved in the area of feeding. He now has transitioned to a simple “Mic-key Button” and is being fed with “Real Food Blends”, a highly regarded brand of balanced nutrients to include more protein and natural food. Will is fluent in ASL and plays the violin.
Like so many other individuals with CHARGE, Will is a warrior, overcoming every obstacle he faces with bravery, courage, and a willingness to beat the odds and then some… What once felt like a curse has become nothing short of abounding blessings and witnessing real miracles in our lives. We can’t wait to see what the future holds for Will because if the next ten years of his life evolve like the first ten already have, there is no stopping him!
