WEST HAVEN — COVID-19 restrictions have been eased for most children but the isolation continues with no end in sight for ‘miracle child’ Eva Grace Kelly.
Eva, 10, dubbed “Eva the Diva” by her family has little physical movement because of a rare condition that also affects her lungs, so she’s had to be ultra-careful during the pandemic.
A simple cold could be fatal.
Hooked to a ventilator with 24/7 nursing care, Eva was born with spinal muscular atrophy, a rare, progressive, genetic disease that robs victims of their ability to move.
She has missed 18 months of school and hasn’t had a tutor because they can’t risk having anyone in the house. Eva can’t participate in distance learning because she can’t operate a computer.
Her older brother also missed in-person high school learning because they couldn’t risk him bringing the virus home.
Eva, normally a social butterfly, hasn’t had a playdate, a shopping trip, or an afternoon at her favorite haunts, the Beardsley Zoo, Mystic Aquarium, Quassy amusement park. She only gets out for doctor appointments and outdoors, but not around people and only if the humidity isn’t bad.
“It’s so hard to watch her go through this,” said her mom Melissa Lombardo Kelly. “She’s very, very bored - there’s only so much TV you can watch.”
It is also uncertain whether Eva can attend school this upcoming year - her doctor is following COVID-19 numbers, the variants and will make a determination later. There’s a chance Eva will be allowed to get the vaccine even though it isn’t approved for children under 12, her mom said.
Her mom worries because Eva has already lost a year of school.
Eva was called the “miracle child” by doctors because she wasn’t likely to live past a year.
While Eva can’t get out much, others now can and are coming out for an annual fundraiser to help the family. “A Special Night for Eva the Diva” fundraiser will be held from 6 to 9 p.m. July 12 at the Valley Diner, 636 New Haven Ave., Derby. The Valley Diner Monday Night Bike Night is sponsored by Valley Motorsports and Haymond Law. Those who cannot attend can send donations directly to the family at 156 Central Ave., West Haven, 06516.
There is a chance Eva will attend the outdoor event but very socially distanced.
The family relies on grants and community fundraisers big and small to get them through life, as there are so many expenses related to Eva’s 24/7 care.
This year they are trying to raise money for a medical stroller, as she has outgrown her latest one, reaching 61 pounds and 51 inches tall.
Melissa Kelly said the strollers can cost upwards of $15,000 new and it doesn’t look like it will be covered by insurance. She hopes to buy a less expensive, used medical stroller and have it modified to hold Eva’s life sustaining equipment.
She said the stroller will be of great help when Eva returns to her activities.
Past fundraisers and grants have helped the family expand Eva’s girly-girl bedroom, as she needs space for her wheelchair and numerous medical monitors, for a kitchen remodel to make it accessible, and devices to help her communicate. Last year’s fundraiser was for help paying down the $6,000 electric bill, high because she is always on a ventilator, feeding pump, pulse machine and suction equipment. Because she has professional nursing care around the clock, power is being used for caregivers and she needs central air-conditioning to breathe correctly.
When Eva was 8 months old the doctors held a family meeting at the hospital, chaplain present, and told them they would never take Eva home and that she was too fragile for a needed surgery.
Melissa Kelly believes even at that young age and through a glass partition, Eva understood what the doctors said and rallied because she wanted to live.
Shortly, she became strong enough for surgery — and she got home.
The doctors told the Kellys, as they told others with an SMA child, to bring her home, love her for one or two years, as SMA was like a “death sentence.”
Melissa Kelly has great respect for her only daughter.
“She amazes me every day — her resilience, her strength, her bravery ... her happy life keeps her going.”
Today, Eva has lost most of her ability to move — she doesn’t talk or walk and even her smile doesn’t work anymore.
But she has been on a new medication for four years, Spinraza, which is keeping progression of the disease at bay and is awakening muscles that hadn’t atrophied. The medication cannot, however, reverse damage, mom said.
Some of the awakening has taken place in Eva’s hands, arms, shoulders, head. Eva is even flexing her feet some.
“The Spinraza is a miracle,” Melissa Kelly said. “It’s making her quality of life better.”
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