The wait is over for the Burke family as they adopt Jett and his sisters. The Burkes’ adoption of siblings also provides the opportunity to make medical decisions for one that has a rare disease.
There were tears and cheers from friends and family who packed the courtroom for the adoption day of 2-year-old Jett and 4-year-old Jaylynn Burke.
The adoption of the half siblings, who share the same birth mother, has been a long time coming for the Burke family, of Kent, who have cared for the children since infancy.
The adoption also means that moms Amanda and Vanessa Burke can make medical decisions and seek treatment for Jett’s rare medical condition without interference from the state.
“We can make decisions right away without having to wait for someone who doesn’t know him as well to make that decision,” Amanda Burke says. “We know that he’s safe and anything he needs, that we can fight for him without restrictions any longer.”
Last year Jett was diagnosed with multiple sulfatase deficiency (MSD), an ultra-rare disease which impacts enzyme function and the body’s ability to eliminate cellular waste. There are less than 100 cases in the world and there currently is no cure.
“His life expectancy is less than 10 years and they told us they expect him to live potentially four years because his is more progressed and his symptoms have been so severe since the beginning,” Amanda says.
Jett sees more than a dozen specialists and needs around the clock medications and care. The Burkes will now be able to make decisions regarding things like clinical trials and specialized testing that Jett may need as the disease progresses.
The Burkes currently are raising money for the United MSD foundation for medical research and are hopeful for a clinical trial in Jett’s lifetime.
“There’s a million dollars that is standing in the way between the gene replacement therapy and the clinical trial and actually getting the substance out of the lab and into the bodies of the children,” Amanda explains. We’re doing our best to raise that million dollars and hopefully we can make that trial happen.”
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.
Related Stories: Learn more about the Burke Family, “Fighting for Jett” was published in Northeast Ohio Parent May 2019 issue.