With the passing of Rare Disease Day this week, one family reflects on the awareness which affects the daily life of their two sons. Jerry and Leanne Yates sported the familiar t-shirts for awareness this past Friday in honor of their two sons, who both have unrelated, rare diseases.
Their elder son, Justin, has Wolf-Hirschhorn syndrome. Justin is missing part of his fourth chromosome which puts him at risk for severe seizures and causes difficulty eating. The rare disease has also caused Justin to be far below the average height and weight for a 26-year-old.
Justin was diagnosed at birth with Wolf-Hirschhorn syndrome. His parents were told he would not live past the age of two. 26 years later, Justin remains in stable health under the watchful eye of his parents and emotional support from his younger brother, Alexander.
While Justin is non-verbal, he often replies to familial conversation with laughs. Alexander, the main source of Justin’s laughter, was diagnosed at age four with Primary Ciliary Dyskinesia (PCD), a disease which causes a person to develop without essential, tiny hairs inside the nose, ears and lungs. This leaves Alexander at high risk for phenomena and causes him to partake in expensive breathing treatments.
Every day Leanne and Jerry are forced to make Alexander wear a chest percussion therapy (CPT) vest to clear his lungs of mucus. The 12-year-old boy also has Asperger’s, a high-functioning form of autism. Alexander does not talk much, but his dry humor brings smiles to a family over burdened with medical difficulties.
“I was told I’d have to make a decision [between] my job or my family,” Jerry says. Leanne and Jerry receive Medicaid for both their sons. The parents spend the waking and sleeping hours of the day caring for their sons. Jerry has been forced to leave many jobs in the past, leaving his last in September. Rare Disease Day is just another day in the Yates household with their two affected sons.
Jerry noted the difficulty in finding a local job. But he fears he cannot go far from his house and leave Leanne alone to care for Justin who is always home, and Alexander who schools from their house. Still, both parents are excessively proud of each son. Their healthy daughter, Talas Furr, helps the parents out as well.
Talas cares for Justin 30 hours a week though a home health agency and provides babysitting for both boys to give their parents some time alone. “If it weren’t for [Talas],” Jerry says, “we couldn’t go out.” The couple says they try to get away for a weekend every six months.
While the boys are often home, Leanne says the family invests time in awareness of each disease, while offering support for families battling them. Alexander goes each year to Victory Junction Camp, a week he spends with children who also have rare lung diseases.
The parents also attend conferences year round for those suffering from Justin’s disease, Wolf-Hirschhorn syndrome. Under the umbrella of Rare Disease Day will continue to be the battle of two affected sons, raising awareness in their every, precious inhales of breath.
By Erin P. Friar