BERLIN — For a little girl in Berlin with a rare muscular disorder, a new kind of chair gives her mobility and a way to develop coordination.
Lorelai Priest is an 18-month-old child from Berlin with genetic muscular myelopathy, which causes severe mobility challenges.
Trisha and Joe Priest met in college. They fell in love, married, and had three children. When their fourth child was born, they were given surprising news. They found out that they both carried a rare gene. In fact, it had been a one in a million chance that either of them would meet and marry another person who carried that gene. And then there was a one in four chance that a child of theirs would get the combination of both those genes and the physical challenges associated with it.
Lorelai is Trisha and Joe’s fourth child, and she got the gene. Lorelai wasn’t breathing or moving at birth and needed to be airlifted to Dartmouth Hospital. She was treated there for a full month before she could go home.
Now 18 months old, Lorelai’s condition has improved with each day since, but she still has extremely limited muscular control. Lorelai was given a Bella’s Bumbas chair last month to help her get around, after Trisha heard about the special chairs through Lorelai’s physical therapist.
A couple in New York, Rebecca Orr and Marty Parzynski, make the Bella’s Bumbas chairs. They donate them free of charge to children who suffer from spina bifida or conditions like Lorelai’s. This can be vital to their development.
Traditional wheelchairs are generally not covered by insurance for very young children, because they grow out of the chairs too quickly. The Bella’s Bumbas chair enables children who might otherwise be immobile to have a mobility device that can enhance the development of their hand-eye coordination and socialization skills.
Lorelai is fortunate to have doting parents and three loving siblings, Libby (10), Joseph (7) and Joyce (4). Two pet cats round out the family.
After Lorelai was born, Trisha began homeschooling the older children to minimize the amount of time she needed to get them to and from school. Caring for Lorelai requires constant vigilance. There is extra care needed for everyday activities. In addition, Lorelai needs frequent intervention to help her breathe, a function which is sometimes hampered by her muscular response.
But in this family, there is nothing but gratitude. Joe, a policeman with both the Berlin and Littleton Police Departments, looks adoringly at his family and says, “I don’t know what I did right in my life, but I’m glad I did it.”