3–year–old with rare disorder, receives gift of a lifetime

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3–year–old with rare disorder, receives gift of a lifetime

A young Quispamsis girl is sleeping a little better — and a lot safer — thanks to the kindness of a retired engineer.

Iris Eyres,three, has Pitt Hopkins Syndrome, a rare neuro-developmental disorder that causes significant developmental delays, problems with motor coordination, balance, breathing abnormalities and seizures.

When the brown-haired toddler was two–years–old, she also developed a problem her mother knew needed fixing.

She began throwing herself around in her bed before going to sleep, a potentially dangerous behaviour on a regular-sized mattress. 

"It's kind of how she self-soothes at the end of the night," said Stacy Eyres. "One night she threw herself too hard and she busted her lip."

Incredibly rare

The disorder, caused by a mutated gene on the 18th chromosome, affects less than 1,000 people worldwide and was only identified as a new disorder in 2007.

Iris can't walk or talk. Instead, she propels herself rapidly around the room with little hops while she sits.

"She is a very happy girl," said Eyres. "She has an affectious, beautiful smile and laugh."

But sleeping issues are common for children with Pitt Hopkins, and Eyres said it's hard to keep putting her daughter in a bed every night where she barely fits — and that poses a risk to her wellbeing.

Tetra Society decides to help

Peter McKeIvey is a New Brunswick member of the Tetra Society, which pairs technically oriented volunteers with those who have disabilities to build aids.

He said his personal workshop is one that has an almost endless amount of supplies; tinkering and building have been a lifelong hobby.

In November, the Saint John engineer began designing a canopy-style bed, big enough for Iris' parents to climb in if she develops seizures and with protective mesh ensuring the toddler doesn't fall out.

Similar beds are made with wood, he said, but being more comfortable with metal he went with the stronger material, designing it from the ground up.

He called different families who had similar beds, including one as far away as Calgary, to get an idea of what was needed.

Local Saint John branches of Russel Metals, MacDonald Applicators, Fender Mender Auto Body Collision Center Ltd and Cooke Aquaculture also chipped in, donating almost all of the materials used.

He said it's heavily reinforced. 

"The house could fall down and this would be in one piece," he said.

A bed like this would have cost the family thousands of dollars, Eyres said.

'Most interesting, challenging and rewarding projects'

"Stacy gave me a gift pack and I appreciate the thought but what made my day was to see these kids playing in there and being happy having a good time," McKelvey said, beginning to cry as Iris and another of Eyres' children played in the background.

"This has been one of the most interesting, challenging and rewarding projects that I've ever done."

Eyres hopes her daughter's story raises awareness of the Pitt Hopkins disorder and McKelvey hopes more people will learn of and use the services provided by the Tetra Society.

The bed is big enough, Eyres said, that she won't need a new one for her daughter for quite a while.

And while she knows there are many hurdles ahead for her daughter, it's nice to have one less.

"There's nothing like making a child happy," McKelvey said.