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Celebration to honor infant with rare genetic disease
PATTON, Mo. -- Caselynn Reagan, daughter of Trenton and Blair Reagan of Patton will be 4 months old on Tuesday. A celebration in her honor, Dreams for Caselynn, will take place Saturday at the Scott City VFW.
While it may be uncommon to throw a party for a child turning 4 months old, in this case every month is precious. Caselynn was diagnosed in July with Type I spinal muscular atrophy, a fatal genetic disease affecting the spine that weakens muscular movement and also leads to severe respiratory problems. There is no cure for the disease.
"We'll be lucky to see her first birthday," Blair Reagan said.
Reagan is every bit the realist, but she displays a remarkable strength in caring for Caselynn's smallest need. Part of the comfort she provides her daughter is water therapy at HealthPoint Firness in Cape Girardeau, where a therapist cradles Caselynn in a swimming pool and glides her over the water.
"It's sometimes called 'floppy-baby syndrome,'" Reagan said, "because they can't hold themselves up. It's hit Caselynn mainly in the legs. She can move her head but she can't hold it up. But she's not in any pain, and her mind works perfectly. She's a very happy baby right now."
Reagan said spinal muscular atrophy, though somewhat rare, is the most common genetic defect in infants, affecting one in every 10,000. She said detecting the condition is difficult during prenatal testing, but a sign that an unborn child may have the disease is a lack of movement in the womb.
"Caselynn didn't move much," she said, "but we didn't think much of it. But after she was born we noticed something wasn't right. Her head and extremities weren't moving a lot, and she wasn't eating."
Southeast Pediatrics conducted tests on Caselynn, and the results were inconclusive. Tests performed at St. Louis Children's Hospital verified Caselynn was afflicted with spinal muscular atrophy. The testing also discovered that Blaire and Trenton Reagan both were carriers of what Reagan called "bad genes."
"I have two older children from a previous relationship," she said, "and they don't have SMA. It skipped our almost 2-year-old daughter. But our genes finally caught Caselynn."
When detected, spinal muscular atrophy can be classified as one of four different types. Type I, from which Caselynn suffers, is the most severe and affects infants up to 6 months. Babies diagnosed with Type I generally do not live beyond 2 years of age. Type II affects children from 6 to 18 months and affects muscular movement and the respiratory system; patients have been known to live well into adulthood. Type III can appear after 18 months, and its effects are less noticeable and the life expectancy of the patient is near normal. Type IV occurs in adulthood and involves weakening of the muscles, which often leaves a patient wheelchair-bound, but life expectancy is unaffected.
Dr. Greg Cugini, Caselynn's pediatrician at Southeast Pediatrics, said her genetic disorder is causing her body to attack its own nervous system starting at the spinal cord.
"It's making her muscles in her arms and legs progressively weaker," Cugini said. "As she ages, her ability to eat will deteriorate. The muscle problems she has will lead to profound respiratory problems."
Gene therapies to fight spinal muslar atrophy could be developed in the future, Cugini said.
"We're always hopeful," he said. "Researchers are looking at gene therapies to reinsert the missing gene to stem the advancement of the disease. But everything is in the trial stage now, and nothing is FDA-approved."
The celebration on Saturday will be a way for friends, family and well-wishers to make their own memories of Caselynn, Reagan said.
"It was Trenton's idea to have it," she said, "and it will also let more people know about her disease. Caselynn also will be there so people can come and see her."
"Dreams For Caselynn" is scheduled from 5 p.m. to midnight Saturday at the Scott City VFW, 1408 Main St. Dinner will be from 5 to 7 p.m., and a live auction will begin at 6 p.m. followed by a live band and dance. The cost is $15 per person or $25 per couple, and children 12 and under are admitted in free. The event is BYOB, and donations to help defray medical and travel expenses will be accepted. For more information, call Ashley Jackson at 579-1731 or Carla Carlyle at 573-318-4312.
Pertinent address: 1408 Main St., Scott City, MO