Alex Kearney was born April 5 2019 to loving parents Shannon and Kyle. They were overjoyed to have him and planned to build a life together in their new home. But they soon realized that Alex wasn’t meeting all of his milestones and he was losing the strength to hold his head up and having difficulty swallowing food.
They hoped for the best, learning it could possibly be just a vitamin deficiency. But many doctor visits, tests and hospitalizations later, they were told that Alex’s condition was far more serious. He was diagnosed March 3 2020 with globoid cell leukodystrophy, also known as Krabbe disease at just 11 months of age. This disease is caused by an extremely rare recessive gene. It causes the brain to deteriorate until the inevitable happens. Average life expectancy is 18 months. There is no cure and no effective treatment.
To say that they are devastated is an understatement. They don’t have much time left with their precious baby and their pain is indescribable. Shannon has taken time off work to spend every day with baby Alex in the hospital. Kyle has to keep working to support the family, but takes some unpaid time off to be with him as much as possible. Alex recently had surgery to have a feeding tube placed abdominally as he is unable to swallow food. They are hoping to be able to go home soon and spend as much time with him as they can in his last weeks and months.
Kyle and Shannon are wonderful, loving people who would always help a friend in need. They need our help now. They are already experiencing financial stress due to missing so much work to care for Alex. This is the last thing they need on top of the devastating, life altering news they have just received. Please donate to make this painful journey a little bit easier for them.
Please support this GofundMe campaign at https://www.gofundme.com/f/help-support-baby-alex-and-his-family