1 week Ago By Robin Huebner
FARGO — Having a child with a complex medical condition, a Pelican Rapids, Minnesota, woman is grateful the trip home from her daughter’s treatment was as trouble-free as it gets. Jalyn Wolford, almost 2 years old, and her mother, Karla Wolford, flew on a private jet from Pennsylvania to the Fargo Jet Center on Wednesday, April 9, greeted by dozens of friends and family members. The two have been away for five months at a Pittsburgh children’s hospital, where Jalyn had a bone marrow transplant as she deals with a rare, genetic condition.
“It was really hard being away from our community. Our community means everything to us — our friends, our family,” Wolford said, tearfully greeting and hugging those who turned out. Traveling on a commercial flight would likely have exposed Jalyn to germs that could compromise her recovery.
Thanks to AeroAngel, a Denver-based charity that transports certain critically ill children, the family didn’t have to deal with airport security, long lines, crowds or flight costs. “That was the best flight experience of my life. They were so gracious and so kind.
The pilots were awesome,” Wolford said, as friends helped gather up Jalyn’s specialized chair, equipment and bins of medical supplies. “We were grateful they had a large plane so that we could bring it all home,” she said. While Jalyn, her mom and grandmother, Joy Solum, came home on the jet, Jalyn’s dad, Lucas Wolford, had the task of driving the family vehicle all the way from Pittsburgh back home to Minnesota.
Jalyn’s 4-year-old brother, Kasyn, was beyond excited to greet his sister, walking out onto the tarmac with his grandfather Dan Solum and grandparents Kent and Becky Wolford. Everyone is grateful the family can finally be together again. “It's still going to be tough.
I mean, there's no easy thing about this, but it's gonna be good. We've all been waiting for this for a long time,” Kent Wolford said. Wearing pink pants, a jean jacket and a bright yellow headband, Jalyn seemed to be taking it all in on Wednesday before heading home to Pelican Rapids.
Wolford said their daughter was a typically progressing child until last September, when at around 15 months of age, they began noticing some regression in her abilities. “We had to push the urgency. An MRI showed pretty devastating results, and the next step was genetic testing,” she said.
Many doctor appointments later, Jalyn was diagnosed with late infantile Krabbe disease (pronounced crab-A), or globoid cell leukodystrophy. People with Krabbe disease can't make a particular enzyme, which causes a loss of myelin, the protective coating on the body's nerves, leading to nerve damage, the Children’s Hospital of Pittsburgh said on its website. The rare, severe condition is caused by a mutation of a specific gene, a recessive trait carried by both of Jalyn’s parents, who are healthy.
“Basically, a 25% chance that our child would get this disease, and Jalyn got it,” her mom said. They learned a bone marrow transplant could slow the progression of Krabbe disease, and ultimately found UPMC Children’s Hospital in Pittsburgh to help their daughter. The couple faced a difficult decision — whether to put Jalyn through the trauma of the transplant, knowing it could give her a longer, better quality of life, or avoid that trauma and let the disease run its course.
“The rare disease team told us that whatever decision you make is the right answer,” she said. Once they made the decision, the couple chose to keep son Kasyn at home in Minnesota under the care of his dad and grandparents, while Jalyn and her mom would stay in Pittsburgh. Family members traveled back and forth as needed, for holidays and work obligations.
Jalyn first had to go through chemotherapy to suppress her immune system in order for her tiny body to accept the transplanted umbilical cord cells, which came from a cord blood bank. The transplant in early December ideally will slow progression of the disease in her brain; however, it won’t improve impacts to her spinal cord, Wolford said. “We know that she's going to have a severe disability, physically.
Cognitively, we don't know,” she said. The person who informed Wolford about the possibility of an AeroAngel flight was a valuable contact in a different way, through a North Dakota newborn advisory panel. Wolford said she has spoken to the panel to ask that Krabbe disease be added to the list of conditions included in standard newborn blood tests.
Minnesota newborns are screened for Krabbe, while those born in North Dakota are not, she said. With earliest interventions and a bone marrow transplant, Wolford said she’s learned many children with Krabbe disease can lead normal lives, without significant disabilities. “Unfortunately, Jalyn won't have that, but I hope other kids born with this disease will have that opportunity,” she said.
.
