In 2010, Sebastian Scully, the newborn son of Erika and Richard Scully of Valley Cottage, NY began exhibiting unusual symptoms that mystified his parents. He would spit up after every feeding, and as time went on, he would spit up bile and blood. He had terrible bouts of painful gas, never slept, and suffered from painful eczema on his little face. He cried continually leaving Erika feeling helpless as a mother.
The weeks passed with no change, so they tried eliminating different foods from Sebastian's diet. After being tested for allergies, it was discovered he was allergic to eggs. They removed dairy, wheat, and egg from Erika’s diet (she was still breastfeeding), but Sebastian continued to struggle. Even with prescription Zantac, things didn't get much better, but they managed the best they could.
At around six months every time they would try to feed Sebastian solid foods he would choke and turn blue. It was terrifying. Erika would have to pick him up out of the high chair and tilt his body forward to help expel the food… all the while trying not to panic. They went back to breast milk as his only source of nutrition. He would still vomit but was not choking as he had been on the puréed baby food.
At his next well-baby visit the Scullys found out Sebastian had started losing weight. They were referred to a pediatric gastroenterologist who diagnosed Sebastian with failure to thrive and dysphasia. His weight had fallen off the charts so before turning to a feeding tube, they continued breastfeeding and added several bottles of Pediasure a day. His weight held on the new protocol, but his doctors wanted to perform one additional test, an endoscopy.
Following Sebastian’s endoscopy, the Scullys finally got their answer... Eosinophilic Esophagitis (EoE).
Eosinophilic Esophagitis is a chronic inflammatory disease that affects only 1 out of 2,000. EoE is an allergic reaction that causes inflammation and damage to the esophagus, the muscular tube that connects mouth to the stomach. EoE may affect a child’s ability to eat – both physically (a swollen esophagus makes it hard for food to go down) and psychologically (a child may grow to associate eating with discomfort). It’s usually caused by a food allergy. Sadly, there is no cure for Eosinophilic Esophagitis; it is a lifelong disease. The symptoms of Eosinophilic Esophagitis are reflux that doesn't respond to medication, difficulty swallowing, food impactions, nausea, vomiting, failure to thrive, and difficulty sleeping.
Erika and Richard were relieved to finally have an answer and were referred to a feeding therapist as Sebastian still had a hard time swallowing anything but liquid. His therapist taught him how to recover each time he choked, and over time he started to tolerate a bit more at each feeding. He also received early intervention services and is now in special education classes plus speech, and occupational therapy. He continues to be in the care of an allergist and gastroenterologist who found out Sebastian has multiple food allergies. His medications often switch back and forth, and at one point he was on over 10, including supplements. He is also very susceptible to common illnesses, and when he gets sick, he has a much harder time recovering than an average child.
Sebastian needs to be continually monitored, and visual scopes with biopsies are the only way to do it. At five years old, Sebastian underwent a routine endoscopy that showed some abnormal cells, hiatal hernia, and polyps that were able to be removed. In September 2016, Sebastian had another routine endoscopy. However this time a biopsy showed another rare cell that was very concerning. The cells are so rare that there is very little about them in the medical literature, and the Scullys were told the cells were linked to malignancies. They were understandably heartbroken.
Leading up to the follow-up scope Sebastian was having some unusual symptoms… losing bits of teeth, vomiting, lethargic, pain and his belly became very distended. In January 2017 his endoscopy showed his stomach was filled with undigested food, and his biopsies suggested a motility condition. Doctors restricted his diet even further because the food Sebastian was eating was not properly moving through his system and was sitting in his stomach rotting. The list of restricted foods includes meat, fish, legumes, soy, dairy, vegetables, and the list goes on, so Sebastian’s primary source of nutrients is now a hypoallergenic formula.
Sebastian was referred to a motility specialist out of Boston Children's Hospital, and while they wait for his appointment, he is currently being treated by a team of doctors out of Mt. Sinai in New York City. Following additional testing, Sebastian was diagnosed with Small Intestinal Bacterial Overgrowth(SIBO). Patients with SIBO have an abnormally large amount of bacteria is present in the small intestine when it should not be there. He is currently being treated with an antibiotic, but SIBO is hard to control, so there is a good possibility he will need more rounds of treatment soon, particularly as he has tested high.
Sebastian will need to have an endoscopy each time he tries a new food, which could be as often as every 9-12 weeks, and will need to stay on the hypoallergenic formula throughout this exhaustive testing. This will be a very long process as Sebastian will be trialing only one food or so at a time. Also, the eosinophilic disease specialist has ordered the results of all Sebastian past biopsies sent to a pathologist that deals specifically with eosinophilic diseases. They want to look at the rare cells found, especially the ones from September. His parents are numb thinking that these cells could be cancer. One of the hardest things for Erika and Richard was hearing the eosinophilic specialist say out loud that "Sebastian is really sick."
Erika and Richard reached out to Ride to Give because they have exhausted all their savings taking care of Sebastian and have become completely overwhelmed. Even with keeping to a strict budget, the out of pocket medical and nonmedical expenses have been adding up quickly. The hypoallergenic formula that Sebastian is on is $132.00 for 27 single servings, and they use at least five times a day. On average they spend $750.00-$800.00 a month just for their son’s formula. He is also on many medications, one of which has a copay of $637.54 for a 14 day supply! Sebastian is also on vitamin and mineral supplements that have now become a burden due to the mounting bills. Then there are the travel expenses… one trip to NYC to his specialist is anywhere from $80.00-$125.00 a day, and they go two or three times a month. All together, they spend roughly $3000 a month out of pocket on Sebastian medical expenses. The Scullys are currently a single income household so when Richard has to miss work and not get paid it is adding to their financial stress.
And as if this is not enough for one family to handle, Richard was recently told that the plumbing department at Lehman College was being downsized and as of July 2nd, he will be without a paycheck. He is working with the human resources department to Cobra his insurance and see if there may be another position available for him. Suffice it to say the Scully's are in panic mode. They feel like they are drowning so Ride to Give is stepping in, offering a much-needed life raft. Our goal is to provide them with a stress-free summer by raising six months of Sebastian’s medical expenses.
We know how hard it is to focus on your child’s healing when you are constantly worrying where the money for your next co-pay or specialist visit or case of formula will come from. Richard has been a proud volunteer member of the Nyack Fire Department for over 20 years and currently serves as the Deputy Chief. The Scullys have given so much to their community, and now it's time for us to give back. Please help Ride to Give help Sebastian by making a tax deductible donation to our fundraiser in support of Sebastian's Courageous Journey!
For updates, please follow Sebastian's Facebook page, "Sebastian's Courageous Journey."
Contributions are solicited with the understanding that the donee organization (Ride to Give, 501c3 tax ID 46-2952297) has complete discretion and control over the use of all donated funds. Questions about how your donation is used can be answered by clicking here. Please visit Ride to Give on the web at www.ridetogive.com or on Facebook at www.facebook.com/ridetogive.
