NewburyportNews.com, Newburyport, MA

June 14, 2013

'He's a gift'

Mom hopes fundraiser will raise awareness of son's rare disease

By Mac Cerullo
Staff writer

---- — Having a child who suffers from a serious health condition can be overwhelming, but knowing you’re not alone can often be a source of great comfort, especially if your child suffers from a disease shared by only a handful of others in the world.

For the Eaton family of Salisbury, that network of friends and doctors has proven invaluable over the course of 11-year-old son Nicholas’ journey with Costello syndrome. Now, the family is working to raise money for a conference that will bring together others in their shoes.

“It’s a great experience, to be able to be with people that know what you’re going through, who’ve been in the same place as you,” said Raileen Eaton, Nicholas’ mother. “When I first had Nicholas, I kept thinking there has to be someone else out there who has had a child like this, and everyone feels that way.”

That feeling of isolation can magnify what is already an incredible challenge. Costello syndrome is an extremely rare genetic condition that affects only around 300 people worldwide and can impair nearly every system in the body, often resulting in an overwhelming array of physical and mental ailments.

Nicholas, for instance, has 31 different diagnoses, with some of the more prominent ones being global development delay, blindness and gastroesophageal reflux disease.

“When he was born, he had a poor suck/swallow, and he couldn’t synchronize the whole suck, swallow, breathe pattern,” Eaton said. “So he learned at a very young age that, ‘When I eat, it hurts, so I’m not going to do it anymore,’ so he developed oral aversion.”

In order to get Nicholas to eat, Eaton had to bring in a feeding therapist, who has visited the house once a week since Nicholas was first born. Nicholas has also had 13 surgeries and takes 29 medications to keep him healthy, including a growth hormone shot that he takes every night.

Over the years, the Eaton family has become very close to the extensive team of doctors whom Nicholas sees on a regular basis, and many of those doctors also regularly attend the biannual conference put on by the Costello Syndrome Family Network. This year’s conference will run from July 30 through Aug. 4 in Orlando, Fla.

The conference aims to bring together families and doctors for a week of presentations and workshops while also giving the children a chance to play with others who are like them.

“The kids are amazing,” Eaton said. “When you get them all together, they all look alike, and it’s amazing to look at them. They have certain characteristics and features, it’s very uncanny when you watch them.”

The problem that CSFN faces is that since Costello syndrome is so rare, the pool of donor money to draw from is small. As a result, it often falls on the families themselves to help raise the money needed to put on the conference. This year, the Eatons are among those who pledged to help make that happen.

So far, the Eatons have raised more than $4,500 toward their $5,000 goal. Next Saturday night, they will hold a fundraiser at The Barn Pub & Grille in Amesbury that Raileen hopes will put them over the top.

Eaton said local musician Jeff Gleason will serve as DJ, and there will be a 50-50 raffle and silent auction. Among the prizes are two sets of Red Sox tickets, autographed pictures of Terry O’Reilly, a Bobby Orr hockey jersey and numerous baskets.

The event will begin at 6 p.m., and all the money raised will go toward the CSFN conference. Eaton said she is hoping a lot of people come out.

But at the end of the day, her main goal is to just raise awareness of the disease.

“He’s a gift, he really is,” Eaton said about her son. “I just want to bring awareness to it, since it’s so rare, and he really is a great boy.”

If you go

What: Costello syndrome fundraiser

When: Saturday, June 22, 6 p.m. to midnight

Where: The Barn Pub & Grille, 5 Ring St., Amesbury

How much: $10 cover charge at the door. All proceeds benefit the Costello Syndrome Family Network’s biannual conference.

More information: www.facebook.com/events/467106566702936/