PRESQUE ISLE, Maine — Just before Christmas Eve, Amber York of Presque Isle spoke in a news story about the blessings she has experienced over the past year as her family continued to seek out the best care for Kayla, their 4-year-old who struggles with a genetic disorder.
She talked of the kindness of strangers who offered the family support after their daughter’s plight was featured in a Bangor Daily News article.
She spoke of her dreams for her daughter.
At the time, Kayla York couldn’t hear any of them.
Now, she can.
After that Christmas Eve story, a family in Bangor donated a bone-anchored hearing aid, or BAHA, to Kayla. It is, her mother said Thursday, “the best gift she has ever received.”
Kayla has CHARGE syndrome, a genetic disorder that can cause multiple birth defects and occurs in about one in every 9,000-10,000 births worldwide, according to the CHARGE Syndrome Foundation. Children born with the disorder often have life-threatening defects, including heart and breathing problems.
Sufferers face swallowing and breathing problems, hearing loss, vision loss and balance problems that delay development and communication. Kayla is legally blind and only recently began to walk and speak more. She has undergone multiple surgeries on her heart, nose and ears, and the trauma to her ears made it impossible for her to be fitted with a traditional hearing aid. She uses sign language to communicate.
Doctors have told the family that some of her health problems may go away after the six-year mark, but there is no guarantee.
The BAHA vibrates the skull and inner ear, stimulating the nerve fibers of the inner ear to allow hearing. The removable device is attached to a bone behind the ear and costs thousands of dollars.
Amber York said the donating family, who prefers to remain anonymous, has helped them more than they know. Medical bills are a lingering financial strain because Kayla requires constant care, physical, occupational and speech therapy and doctor visits.
The family, which includes Amber York’s husband, a 10-year-old son and 6-year-old daughter, is still struggling financially to pay medical bills that piled up before her MaineCare kicked in.
All of Kayla’s doctors are in Portland, which means several multiday trips to the city, sometimes every two weeks. York also misses several days of work each winter because her daughter’s immune system is so compromised that she contracts colds, flus and other illnesses often.
“Their gift means that we don’t have to purchase this on our own or go through insurance, and this is Kayla’s to keep forever,” she said. “I immediately took her to have it set up, and she loves it. It is a process to keep it on her head. but we are working on it.”
The family is hoping to buy Kayla an iPad so she can communicate better. She attends school and has used the machine in the past to learn to count and master other skills. The family believes that the apps on the device, which starts at $499, will help her learn additional skills.
Amber York said she can’t thank the Bangor family enough for their gift of the hearing aid, and she remains grateful to everyone who has supported the family. She is optimistic that Kayla will continue to progress as time passes.
Anyone who would like to donate to the family for Kayla’s iPad may mail checks payable to Helping Hands for Children & Families, FBO Kayla York, P.O. Box 1116, Presque Isle 04769.