Fundraiser planned for child with ‘Elvis smile’
WEST HAVEN >> A 6-year-old girl who was losing the last vestige of her smile last year to a degenerative disease that has taken most of her ability to move, has found a ray of hope in a newly approved drug, Spinraza.
The medication won’t get Eva Grace Kelly’s original wide smile back, but it has halted the degeneration of what her mother calls Eva’s “Elvis smile,” meaning the right corner of her mouth goes up.
That’s a big one for Melissa Lombardo Kelly, who works around the clock to give Eva a high quality of life while pediatric nurses tend to the child’s medical needs 23 hours a day.
“That (smile) was huge for us because she’s always a very happy little girl,” Kelly said. “She’s a trouper.”
But the emotional and financial struggle for the West Haven family will never end, as Eva’s disease is terminal and her mother can’t work because she fills in on nursing shifts and drives Eva to therapy visits.
That’s where Valley resident Dick Lupkas, who dedicates his life to helping others, comes in.
Lupkas is holding a fundraiser in hope of easing some of the family’s financial burden as Eva is in need of equipment and more space as she grows.
The third annual “Eva the Diva” Bike Night, organized by Lupkas, will be held 6-9 p.m. July 10 at the Valley Diner, 636 New Haven Ave., Derby
There will be a professional stunt show donated by Moto Martin Professional Stunt Riders, along with trophies, raffles and a 50/50 raffle.
Lupkas said he has a special place in his heart for Eva.
“She brings tears to your eyes and a smile to your face at the same time,” he said. “I just love her to death.”
Eva was born with the most severe form of spinal muscular atrophy, a progressive, genetic disease that usually kills children by age 2.
The rare degenerative muscle condition has left Eva unable to walk, talk, stand, move, breathe or swallow food on her own.
Last year her muscle ability and smile were fading, although her cognitive abilities are intact.
She began Spinraza injections in March — soon after FDA approval — and while she won’t regain any ability she’s lost, it has halted muscle decline and ► at the same ◄ strengthened what she had left.
The disease causes all muscle tone to fade and eventually that includes the muscles for breathing, so there is hope that the Spinraza can extend Eva’s life by preserving her breathing muscles, although her mother said it’s still a “terminal” condition.
Eva can still nod, move her ► twinkling ◄ eyes, move some fingers and flash her “Elvis smile.”
Eva relies on a machine to breathe and is fed through a tube in her stomach. Even catching a common cold could mean hospitalization or even death for Eva.
Kelly, who has ► always ◄ said it’s her job as a mother to hold out hope, said the good news is that Eva has grown and needs a ceiling lift to take her out of the bed and put her into the wheelchair and the bathtub.
The lift is only partly covered by insurance. Her hope is the fundraiser will help with that expense.
Eva also needs an addition on her tiny Shopkins-theme room because as she grows her equipment gets bigger.
Kelly is putting the call out for qualified pediatric nurses trained in tracheostomy tubes because she has 31 shifts open in July and is exhausted. Insurance covers the pediatric care.
Eva has already defied the odds by surviving to 6 years old. Kelly said they’ve sadly lost friends in the SMA community to death, including a friend of Eva’s in Greenwich.
“It still could happen at any moment,” Kelly said.
QUALITY OF LIFE
Eva’s family has taken chances by taking her out to fundraisers, school, swimming in the backyard pool and on trips in the belief that her high quality of life has a lot to do with her will to live.
Eva has a brother, Noah, 11, who is on the autism spectrum.
As she gets older and learns more about communication, Eva is increasingly communicating through a device operated by her eye gaze.
The device allows her to ask for things and even facilitates play with Noah. Kelly said Eva is opinionated, and through eye contact they’ve had typical mother/daughter squabbles about outfits to wear or buy.
“She’s learned her life is what it is and it’s amazing,” Kelly said.
The hope is that a cure will be found for SMA while Eva is still here.
Kelly has said researchers are making great strides with that type of disease, in the same category as amyotrophic lateral sclerosis or ALS, also called Lou Gehrig’s disease.
Those who cannot attend the Bike Night can send donations directly to the Kelly family at 156 Central Ave., West Haven 06516.
Melissa Lombardo Kelly was herself somewhat of a miracle child ►. Her mother, Ann Lombardo, devoted herself to her care ◄ .
In 1977, at age 5, Melissa became the first child to have a pacemaker installed for a blockage. She had to be careful and stay inside during most of her childhood. She has had many surgeries, nearly dying while having a new device installed while in high school, Lombardo said.
Lombardo last year said she often asked God why her daughter, who has had so many serious health issues from childhood through adulthood, would end up having a child who needs 23-hour-a-day nursing care.
Lombardo said she decided maybe it happened that way because God wanted Melissa to learn through example to have the dedication needed to care so closely for a child with more than her share of needs.
“I’m a little miracle and Eva is my little miracle,” Kelly said.