Today is Rare Disease Day. Leanne Yates and her husband, Jerry, have two good reasons for wearing custom-made T-shirts supporting awareness and education about rare diseases. Their sons Justin, 26, and Alexander, 12, have two unrelated, rare diseases.
A disease or disorder is considered rare when fewer than 200,000 cases are known in the U.S. Leanne says that there are only 600 cases worldwide of Wolf-Hirschhorn syndrome, which affects her older son. Justin is missing part of his fourth chromosome, and this disorder causes severe seizures, feeding issues and small stature.
Justin is also non-verbal, but often reacts to the conversations he hears with giggles and grunts. Leanne was told he would not live past age 2, but his health is stable.
Alexander, meanwhile was diagnosed with Primary Ciliary Dyskinesia (PCD) at age 4. This disease is characterized by the absence of tiny hairs in the nose, ears, lungs and throughout the body that help with various body functions. It’s similar to cystic fibrosis in that Alex is prone to pneumonia and must use a chest percussion therapy (CPT) vest daily to keep his lungs clear of mucus.
Because of the diseases, both boys have feeding tubes, and Alex is a homebound fifth-grader, wise beyond his years. He also has Asperger’s, a high-functioning form of autism. He’s soft-spoken and smart, but prefers relaying his answers to questions through his parents. He knows more about his condition than they do, Jerry jokes.
Leanne and Jerry are fierce advocates of their sons, and want people to be aware of the fact that some rare diseases and disorders — like many medical conditions — aren’t evident at first glance.
“Looking at Alex, you’d never know anything’s wrong,” Leanne says.
Their sons are on Medicaid, and the Yates dedicate their days — and nights — to their children’s care. Jerry has given up several jobs to care for the boys. He left his last job in September.
“I was told I’d have to make a decision, to choose my job or my family,” Jerry says. “I’m sorry, but these kids come first.”
Mornings are filled with taking care of Justin’s personal needs and giving both boys numerous medications. Alex has to wear the vest for 20 minutes twice a day — and he hates sitting still. The same goes for time-consuming breathing treatments. Because he is frequently on IV antibiotics, Alex also has a port-a-cath for ease in delivering medication.
The family ventures out some but not often. Justin doesn’t eat at all and Alex is a super-picky eater, his mom says. He’ll occasionally eat a piece of white bread, or five frozen M&Ms at night.
“We have to give lots of explanations and lots of education,” Leanne admits.
“People will stare at Justin out of curiosity or just rudeness,” Jerry adds. “Alex doesn’t like it. He’s protective of his brother.”
And Alex doesn’t want anyone to know about his disease either, his dad says.
Leanne notes that both boys were born prematurely. Justin was diagnosed at birth but Alex wasn’t diagnosed until later. Leanne has a daughter, Talas Furr, who was born healthy. Jerry also has a daughter from a previous marriage.
Jerry says the family is well known at Levine Children’s Hospital, where Alex receives care. Justin was treated at Jeff Gordon Children’s Hospital until he aged out. Now he is cared for by their family physician.
Physical therapists work with Alex at home, and he gets a visit from a home health nurse each month. His teacher also visits from Hurley Elementary School. Alex is proud of the fact that he is an A-B honor roll student.
“I keep doing that,” he says.
He’s read the “Diary of a Wimpy Kid” series and science is his favorite subject.
He has gone to Victory Junction Camp for three summers, and hopes to return this summer. Children with similar diseases go to camp the same week, and Alex attends with other campers who have lung issues.
At camp, he had the chance to meet Richard Petty and Trace Adkins.
“His language is not too good,” he says of the country music star.
When Alex was 6, he and his family went to Hawaii through the Make-a-Wish foundation. He dug a huge hole in the sand, swam with the dolphins and danced the hula at a luau, but says his favorite thing was riding in a limousine.
“If the TV would have worked, it would’ve been better,” Alex says with his typical dry humor.
Talas, who lives nearby, takes care of Alex for 30 hours a week through a home health agency, providing respite care for Leanne and Jerry.
“If it weren’t for our daughter,” Jerry says, “we couldn’t go out.”
“We try to get away at least one weekend every six months,” Leanne says. The couple also pops out for dinner occasionally.
The Yates enjoy visiting Cherish House, a bed-and-breakfast in Monroe, run by a couple for parents who are full-time caregivers. Leanne and Jerry have visited twice, and love the quiet and home cooking. Out of concern for the boys, Jerry says, they never travel far.
Jerry is also paid for 40 hours a week through the same home health agency, providing personal care for Justin and helping him with general tasks of daily living and community skills. Still, he’d rather be working what he considers a “regular job.”
“I have to go back to work eventually,” Jerry says. “It’s hard to find a job locally.”
He wants to work third shift so he can be home during the day to help Leanne.
The couple have reached out to other families by attending conferences on Wolf-Hirschhorn Syndrome. Facebook has also proven an invaluable tool for Leanne for sharing information with other families affected by Wolf-Hirschhorn and PCD.
Mostly, Leanne and Jerry try to keep both boys in a good routine. Routine is especially important for Justin, who can have seizures if he is overstimulated. However, he does go out for his birthday every year, to a certain place, Jerry says.
And that certain place would be?
“Hooters,” Jerry says, a bit sheepishly. “He likes that.”
Justin also enjoys watching football and racing.
The boys’ conditions have understandably created a limited lifestyle for the family.
“We’re very limited as to where we can take them,” Jerry says. “We don’t have a lot of friends. We stick mostly to family.”
Leanne tried taking Alex to Boy Scouts, but it was too much for him. She is looking into a small karate class for him, and he participates in a weekly social group with other Asperger’s boys. Leanne and Jerry also attend an autism support group in Concord.
Both boys participate in the Miracle Baseball League in spring and fall. Each boy is assigned a “buddy” during play. A bureau in Alex’s room is full of baseball trophies.
“We’re proud of our boys,” Jerry says.
Freelance writer Susan Shinn lives in Salisbury.