For Sarah Murphy, working full-time and caring for her 11-year-old son, Tristan, and 6-year-old daughter, Delilah, can be challenging.
Delilah was born with a rare chromosomal disorder called chri-du-chat, also known as cat’s cry syndrome. Infants with this condition often have a high-pitched cry that sounds like a cat.
When her daughter faced surgery last week, Murphy needed help with another problem — how would Delilah manage the stairs into their home? She turned to friends for help, and they came through.
“I asked them if their husbands could help me come up with something just to slide over the stairs,” she said.
Murphy said the group went above and beyond her expectations. One of her friends contacted Randy Leach and Vince Marr, of Handyman Services. The pair were in a the middle of another project, but donated their time to construct a ramp and have it in place before the family returned home last week from the hospital.
“We said we’d take care of it and went over on Wednesday morning and built it,” Leach said.
Murphy said the community support was overwhelming. Donations and discounts helped with the cost of the lumber. Her friends also cleaned her house, did her laundry, and even kept her yard mowed.
“The community, my church, people I want to high school with, all reached out and donated,” she said. “We can’t begin to say thank you or pay it back.”
The disorder has created several physical problems and cognitive delays for Delilah. She is considered to be nonverbal and also struggles with mobility. She has been taking part in physical therapy since age 2.
“She has too much tone in her legs, so they work against her muscles,” Murphy said. “She can’t get her legs to pull the way they are supposed to.”
Murphy hopes the surgical procedure performed last week at the Shrine Hospital in St. Louis, Mo., will correct that problem. A tendon was cut on each side on both of Delilah’s calves to release the muscles and remove pressure on her hamstring.
Delilah will wear a cast on each leg for six weeks and is getting around with the use of a walker.
Murphy said the new ramp would be a huge benefit to her daughter. Having the ramp and being able to use a walker will increase her mobility and give her a feeling of independence. After both casts are removed, she will be fitted with braces so she can start using her legs and hopefully be able to walk.
Delilah attends first grade at Adams Elementary School. Murphy said her daughter is learning some sign language and the school has also provided a special tablet that helps Delilah to communicate.
“If she can’t sign it due to the dexterity of her hands, the tablet can do it for her,” Murphy said.
Delilah attends music, P.E., and other classes with her peers, with the exception of reading and math. Murphy said she is significantly behind the other first-graders.
“We don’t know where she’ll end up — we just take it day by day,” Murphy said.
Murphy said her daughter was also reaching a point where a decision about her education will have to be made.
“We have to decide if we want her to go into a class where she learns more of the basic needs,” she said.
For the most part, the students are very understanding of her daughter’s limitations and treat her kindly, Murphy said.
Some kids who don’t understand the situation have made fun of her because of her inability to walk and communicate.
“There is ignorance occasionally, but that’s when we have to be her voice,” Murphy said. “She just wants to be part of things like everybody else.”