Community Works Together to Help Stoughton Boy with Rare Disease

is a sweet, smart six-year old kindergarten student at the , who loves pop tarts and playing with friends.

His short life has been filled with challenges, however, and now he’s facing the most daunting one of all – not being able to eat.

The little boy, who is the son of Miguel and Marlene Silva, looks like any normal, healthy child on the outside.  But he has severe food allergies, and was diagnosed with Eosinophilic Esophagitis, a rare disorder in which food causes the body to produce eosinophilis (which damage the esophagus), when he was four.

The situation has gotten so serious that he soon will have to have to go without any food or drink, except for water, and will be fed formula through a feeding tube in his stomach.

“Imagine having to tell your child he can’t eat.  It’s been very difficult,” said Marlene, who is a part-time nurse.

Marlene Silva knew early on that her son had problems with food because he refused most healthy foods, including vegetables, fruits and meat, when he was just a toddler. But other problems have made him difficult to diagnose.

He also has sensory difficulties, including Pervasive Development Disorder Not Otherwise Specified (PDD-NOS), which made doctors think he might not be eating due to behavior issues.

A good-natured boy, he doesn’t tend to complain, and hasn’t had symptoms, such as vomiting and diarrhea, which are typical of that disease.

But as he refused more and more foods, they finally decided to give him a colonoscopy and endoscopy, which revealed his illness.

“The doctor gave us the diagnosis, and we had never heard it before. It made it really tough. With Ryan’s illness there’s no one way to fix it and everything is unknown,” she said.

Since then, Ryan has had his ups and downs. Marlene stopped giving him milk and eggs, and he has been eating almost all carbohydrates, along with vitamins and medication.  Doctors thought he was in remission, and Marlene hoped they found the right mix of foods to keep him from getting worse. 

Then, this year, he started to become very lethargic, so doctors tested him again.  This time, the news was more devastating; his body was producing even more eosinophilis, which was doing more damage his esophagus. 

After consulting with a number of specialists, it was agreed that the boy would have to go without any foods, and drink only his special formula.  Because he can’t drink enough formula to keep him healthy, he’ll have to get it through a feeding tube.

“It’s a last resort, but everyone came to the same conclusion,” Marlene said.

The development has been devastating for the whole family, and will make coping even more difficult, Marlene added.  Ryan has a little sister he enjoys playing with, but once he has to go without food, it will be very difficult to watch her eat.

Ryan’s father also has to work long hours, and the complications of his illnesses make it harder for him to be away.

“He’s very protective of his son,” Marlene said.

Friends and community members have been very helpful, however.  Last year, they helped the Silvas with a fundraiser to help raise money for CURED, an organization that contributes 100 percent of its funds towards finding a cure for Eosinopilic Esophagitis.  The fundraiser had a good turn-out, and the family was very appreciative of the support.    

This year, friends and supporters are planning a bigger fundraiser, which blends fun with a great cause.  On Sunday, , the family will hold a fundraiser at the , which features Zumba, a puppet show, and snacks. 

Marlene, who is a member of the Gibbons School Parent Teachers Association said current PTA president Diane Medeiros has helped to plan the event, and businesses have been very supportive.

Most of the proceeds will go towards CURED and Mass General Hospital, but some will help the family cope with Ryan’s medical bills. Last year, they spent $17,000 on medical-related bills above and beyond what insurance had covered.

“Things have been quite expensive,” Marlene said.

Though there is no known cure for the ailment, Marlene hopes that Ryan can someday have a variety of food choices, and be off the feeding tube. His tube will be inserted on June 29, and at that point he will stop eating solids.

After six to eight weeks, he’ll be scoped to make sure that his esophagus has healed, and then he’ll get to have one type of food, before he’s tested again. It is hoped that with this type of monitoring, they’ll be able to pinpoint the exact foods that cause Ryan’s problems.

“We’ll find things he can and can’t eat,” Marlene said.

Information about Zumba Fundraiser:

Date:  Sunday, June 26

Location:  VFW Post 1645, 837 Washington Street

Time:  1 – 4 p.m.

Cost:  $20 per person, or $25 per family.

Peg’s Puppets will perform at 1 p.m. Raffle includes Red Sox tickets

For more information: contact Marlene at 781-760-1458 or email Marlene8177@yahoo.com.