PRESQUE ISLE, Maine — When a baby is born, most parents happily cradle their healthy child and take him or her home from the hospital in a day or two.
But that isn’t what happened to the York family of Presque Isle. Their baby, Kayla York, began struggling with the effects of a genetic disorder shortly after her birth in December 2007. Before her parents could spend any time with her, she was rushed to another hospital for treatment.
While there have been setbacks in the past four years, there also have been moments of celebration. The family is counting its blessings this holiday season for the gains Kayla has made and focusing on getting her equipment that could help her continue to make progress.
Kayla York, 4, 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. Most endure extended hospital stays and undergo numerous surgeries and other treatment.
Sufferers face swallowing and breathing problems, hearing loss, vision loss and balance problems that delay development and communication. All are likely to require medical and educational intervention for many years and face lifelong challenges.
Kayla’s mother, Amber York, watched last year as her daughter struggled to walk, talk and fight off the colds, flus and other illnesses that plagued her all winter long. Amber and her husband were steeped in worry over medical bills and their financial situation. Kayla has undergone multiple surgeries on her heart, nose and ears.
In the past year, however, things have changed and Kayla has made made progress. The Yorks have been astounded by the support they have received in the last year since their daughter’s plight was featured in a Bangor Daily News article.
“We were just amazed,” Amber York said earlier this week. “We couldn’t believe it.”
While she still faces multiple challenges, Kayla in the last year has gone from being able to walk only with assistance to walking independently. She also has begun to speak more. She knows her own name plus a few more words.
“She still uses sign language as her means of communication,” said York. “She does have a hearing aid, but with all of the trauma done to her ears she will not put it in.”
Amber York said the family is hoping to get Kayla a special hearing aid that would be attached to a bone behind her ear.
The youngster is legally blind, but has some vision in her right eye and will need hormone therapy in the future since her body is not producing growth hormones.
She is still participating in physical, occupational and speech therapy.
“We want to try and get her ready to go to school,” said Amber York. “Our goal is to get her in public school, but we know that she will have some challenges. If public school isn’t right for her then we will look at other options.”
The 4-year-old qualifies for assistance under MaineCare, but coverage did not begin until she was 9 months old. The family, which includes a 10-year-old son and 6-year-old daughter, is still struggling financially to pay old medical bills and for travel costs associated with Kayla’s medical care. 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.
The family remains focused on getting Kayla the help she needs. The parents are hoping to purchase an iPad for their daughter because she “has used them before and has learned some new things … It has taught her to count and she is learning some animal sounds and picking out different objects.”
York added that Kayla has used some of the apps on the iPad to learn additional skills, and the family believes that the machine would be a good investment.
“It will help her communicate her wants and needs and also give her a chance to learn at her own level at her own pace,” she said. “Kayla is still a very determined little girl and is out to prove everyone wrong and to show everyone that she will be fine.”
Doctors have told the family that some of her health problems may go away after the six-year mark, but there is no guarantee.
This Christmas Eve, the York family is celebrating their daughter’s achievements and expressing gratitude to everyone who has supported the family.
“We want to thank everyone that donated to Kayla last year,” said York. “We have never been through anything like this before, and never in a million years did I think that there would be so many caring people out there. But we learned that from everyone who supported us and helped Kayla.”
Anyone who would like to donate to the family for Kayla may mail checks payable to: Helping Hands for Children & Families, FBO Kayla York, P.O. Box 1116, Presque Isle 04769.