Kelly and Steve Simpson’s daughter, Delainie, spent the first 4 1/2 months of her life in three hospitals.
Delainie was born at Frederick Memorial Hospital with a rare chromosomal abnormality known as an unbalanced translocation, about which little is known. Delainie was later taken to Children’s National Medical Center in Washington and finally to The Children’s Hospital of Philadelphia to help figure out how to help her, Kelly Simpson said.
Delainie, now 8 1/2 months old, has an extra piece of chromosome that has thrown off the timing of her development inside and outside the womb, Simpson said. This can lead to a host of health problems involving organ development, blood sugar levels and breathing.
Matt Dayton, a friend of Steve Simpson, was heartbroken by Delainie’s condition and decided to use some of his professional contacts as a band promoter to host a benefit for the family.
Kelly Simpson said she and her husband, who live in Waynesboro, Pa., were against the idea at first.
“We thought, ‘We’re normal people, everybody has their stuff, don’t worry about it,'” she said.
But Dayton was adamant, and they finally agreed.
They have health insurance, but Delainie has many special needs. Funds raised by the benefit can help them pay for medical and special-needs expenses until Kelly Simpson can return to work, she said. She used to work at BB&T bank in Frederick.
Saturday’s Delainie Simpson Benefit in Brunswick will feature 10 local bands: Pale Divine, War Injun, Iron Man, Ghost of War, Admiral Browning, Akris, Trifecta, Despite Charm, This Too Shall Burn and The Civil.
The benefit will be held at 2 p.m. Saturday at the Brunswick Fire Hall. The cost is $15.
“I’m just floored that it’s even happening,” Kelly Simpson said.
‘A little joy’
When Delainie was just a few weeks old, doctors told the Simpsons to take her home and enjoy their time with her, Kelly Simpson said.
At 6 weeks old, Delainie turned blue in her arms and stopped breathing, Simpson said. Doctors figured out Delainie’s airway was as wide as a pinhole. She was having seizures and severe acid reflux and could not recover because of her restricted air passage.
She had a surgery to open her airway and a reflux surgery, both of which she has recovered from well, Simpson said. She eats with a gastrostomy tube, is profoundly deaf and has blood sugar issues.
Simpson said she has started teaching Delainie sign language, to which she responds with rapt attention. Delainie has not had a seizure since September.
Each day brings the prospect of progress or problems, but at least now, Simpson said, she and her husband and their daughter’s doctors are able to concentrate more on Delainie’s developmental issues.
They will not know Delainie’s mental capacity, which could range from a slight learning disability to severe retardation, until she is about 2 1/2 years old.
Meanwhile, Simpson travels with Delainie to Philadelphia several times each month to visit her doctors.
“She’s doing phenomenally well,” Simpson said. “She’s just such a little joy.”
