Luke’s battle with Chiari Malformation

Please take the time to read this for my son. For those of you who don’t know, Luke has been recently diagnosed with Chiari malformation after battling symptoms for years. He will be having surgery on April 1st called Posterior fossa decompression which is a surgical procedure that removes bone at the back of the skull and spine to widen the space for the tonsils and brainstem. In addition to this, they will also take a graft of pericranial tissue to be used as a patch which will help protect the open space where the bone was removed. Sort of like taking out a pair of jeans, this will take pressure off. He also has syringomyelia- a disorder in which a cyst or cavity forms within the spinal cord. Adults and children can go years in pain and suffering with this condition because their doctor or pediatrician doesn’t even know what Chiari is and that’s not acceptable. This is more common than I realized in a lot of people but it’s not talked about enough. We have to bring awareness. It just might save you or a child from years of suffering with random everyday bouts of unexplained symptoms like my son has endured for over 3 years. I finally decided not to back down from a doctor repeatedly telling me that all of these various symptoms were in no way linked. Always trust your intuition when it comes to your kids and family.
We will have an unknown road to recovery although there is no cure for this condition and have to have an unknown number of follow up Doctor visits in Birmingham (which is almost 2hours away) along with needed expenses such as hotel stays and gas while he recovers. He is currently on Medicaid which covers the surgery but his father is having to miss work to be here for Luke throughout this whole process. Luke is 9 years old (the one in the middle) and he is one of the sweetest children in this world.

Please continue to pray for him as he faces this challenge ahead.  And thank you so much to anyone who decides to donate and help our sweet man get through this battle that lies ahead.