NewburyportNews.com, Newburyport, MA

PortWatch

June 14, 2013

'He's a gift'

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

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.

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