In celebrating her third birthday on November 5, Leah Storm surpassed the expectations of Vassar Brothers Medical Center staff. In 2015, when Leah was delivered six weeks early by emergency c-section, doctors were alarmed by the baby’s condition.
Diagnosed at Albany Medical Center with congenital heart disease, end-stage renal failure, a missing left ear and absence of genitals, Leah’s survival is owed to her tenacious parents and an outpouring of support from the Saugerties community. After a short lifetime of nightly dialysis via a peritoneal port in her stomach, a viable match has been found for a life-changing — and costly — kidney transplant. A community benefit to raise money for the family has been scheduled for this Sunday at the Centerville firehouse on Route 212.
From that initial fatal prognosis until now, Leah’s quality of life has steadily improved. Her travails since birth have included an announcement of an initial fundraiser to cover hospital bills a year after her birth, an update after a successful open-heart surgery and again when three inches of her small intestine were cut off after they were strangled by a hernia in her body in 2017.
“Life’s going to be amazing after the transplant,” said Leah’s mother, Kristel Storm. “She won’t be hooked up to a machine for twelve hours. When she cries, she can actually come into our room. When she cries now at night, we can’t take her to our room to console her. She’s hooked up to the machine.”
Kristel and Craig Storm, high-school sweethearts who graduated from Saugerties High in 2008 and 2006 respectively and got married in 2014, have since adopted their niece Carmella. Leah’s round-the-clock care has precluded her mother from continuing her old job as the team leader at Target; Craig is employed at Krause’s Chocolate, one of the businesses contributing to the fundraiser later this month.
Although Craig had initially planned to donate a kidney, his wasn’t a match for his daughter. A teacher in Boston whose daughter needed a similar surgery will be providing the organ that will be transplanted at Boston Children’s Hospital. HIPPA laws prevent the family from meeting the donor until after the transplant, but they do intend to show their gratitude after the procedure.
Each day, Leah sees a speech therapist to overcome her oral aversion. Since birth, she has been fed through a nasogastric tube, up through her nose and down into her stomach. She “eats” constantly this way to keep her weight up for the impending surgery. She also has play therapy and physical therapy in Albany. She currently walks with the assistance of leg braces.
“She’s so spunky,” said Kristel. “She’s very sarcastic, playful, but if she doesn’t know you she’s shy. She loves life. She’s a typical three-year-old, but with all these medical problems.”
Patricia Rauh is no stranger to organizing community benefits. Last year, she spearheaded a fundraiser that raised $17,000 towards a handicapped-accessible van for Jeff Madelone, a Saugertiesian with Lou Gehrig’s disease.
“I chose the Storm family because they have a long journey ahead of them,” said Rauh. “I heard about the little girl from the time she was born. They’re a young family, and anything like this is very heartrending. You always need money to get you through the hard times. You need to pay your bills, you need to eat, and you need to cover your lost time at work.”
Among the Storm family’s upcoming expenses are parking in Boston, which will cost $30 per day, gas money so that the family can bring Carmella to visit on weekends, and a three-month stay in a hotel room.
The November 18 fundraiser at the Centerville firehouse will include a pasta and sausage dinner: donated pastries for sale from The Meltaway, Sweet Fentons and The Cup Takes the Cake. There will also be a silent auction featuring goods from village businesses, and a raffle for $1000 whose winner will be announced at this year’s Holiday in the Village celebration.
“It’s been hard but it’s also a blessing. It makes my husband and me grateful for life,” said Kristel. “We don’t take a second for granted. We don’t know when something is going to change in the blink of an eye.”