Twenty-two-month-old Jett seems like a typical toddler. He is curious about the world around him, but also tightly clings to his parents. His big brown eyes light up the room when he smiles.
However, people who first meet Jett, who will soon be adopted by the Burke family in Kent, might not realize he has a rare disease called multiple sulfatase deficiency (MSD), which impacts enzyme function and the body’s ability to eliminate cellular waste.
Amanda Burke says Jett has continually had medical issues, including a dozen hospitalizations, while in their care as an infant.
The family or the doctors initially didn’t know the reasons for Jett’s conditions. It took nine months to get the official diagnosis of MSD.
“We were fighting so hard to figure out what was wrong with him and every test kept coming back normal,” Amanda Burke says. “We kept pushing and collectively with the doctors, we were able to find the right test to help the pathologist identify an abnormality in his blood that lead to the diagnosis of MSD.”
According to the U.S. Department of Health and Human Services, “Multiple sulfatase deficiency is estimated to occur in 1 per million individuals worldwide. Approximately 50 cases have been reported in the scientific literature.”
Most children do not have symptoms at birth, but it is degenerative as they develop, according to the National MSD Foundation. The disease causes developmental delays, loss of motor and communication skills, and difficulties with swallowing, eating and breathing. Children also are more likely to develop infections, as well as bone, heart and circulatory problems.
The Burke family was relieved to finally get a diagnosis, however, the news was devastating.
Jett is believed to have the late-infantile form of the disease. Amanda Burke says he will slowly lose the ability to walk, speak, breathe, see and hear.
Currently, MSD has no cure and it is considered terminal. Jett’s life expectancy is estimated to be around four years based on his medical history and current progression.
“It’s not something you want to hear, but we knew something was seriously wrong with him,” Vanessa Burke says. “It was definitely an answer, but not the one we were looking for.”
“There is no current treatment for it and all we can do is manage his symptoms,” Amanda Burke says, adding they have help from home nursing and Jett sees multiple specialists from Akron Children’s Hospital. The United MSD Foundation is working to raise $1 million to fund a human clinical trial for MSD. The Burkes hope these funds can be raised in time to save their son.
“We try to be positive about it,” Vanessa Burke says. “We just keep rolling.”
She adds it helped to know other families from around the world going through it and have that support system.
Amanda Burke says they also deal with the challenges of Jett’s disease with the help of his siblings and his biological dad, Tyrin.
Tyrin says he was shocked and upset when he first heard of his son’s disease.
“I think they are incredible parents,” he says about the Burkes. “He loves them and they love him. I am happy we are all like a family.”
“It’s important to have many positive relationships in Jett’s life,” Amanda Burke says. “You can never have too many people loving your son. Our son is fortunate. He has all three of us.”
Jett also has sisters: Jaylynn, 4, who is his half-sister and will be adopted by the Burkes when Jett is, and Maya, 3, who was adopted by the Burkes in 2016. He has an older sister, Shyann, 5, who is being raised by a relative. The Burkes say Jett’s sisters love, are protective of, and help with their brother’s care.
“We are a tight-knit family,” Amanda Burke says. “Lots of snuggles.”
It hasn’t been an easy road for the Burkes, who became Jett’s foster parents when he was just two-days-old. They credit the team at Summit County Children’s Services, which helped them fight for Jett.
“We almost had to give up because people weren’t listening to us,” Amanda Burke says. She recalls the day she had to call their home coordinator and say, “If you do not find this baby a new home, he is going to die.”
“Through the effort of children’s services representatives and a nurse practitioner they contracted to assist us, we learned how to be his advocates — that ultimately got him to his diagnosis and hopefully one day to a treatment. With kids who have advanced diseases, you have to be their advocates because they can’t speak for themselves.”
To learn more about MSD and Jett, visit curemsd.org. Jett also has a Facebook page: Ready Set Save Jett, and an Instagram: @readysetsavejett developed to raise awareness about his life with MSD and to help garner donations for the human clinical trial.