Most of you have followed Mason’s journey and know his story but for those who haven’t here is Mason’s story. Mason was born on July 16th and just 3 short days after being born he was diagnosed with multiple congenital heart defects: coarctation of the aorta, patent ductus arteriosis, arterial septal defect, and bicuspid aortic valve disease. He was transferred from our local hospital to Ann & Robert Lurie’s Hospital in downtown Chicago, IL and had lifesaving cardiac surgery at 7 days old. He was in the hospital for a little over a month before being able to come home with a feeding tube. Mason has done great recovering from his heart procedure and continues to be monitored yearly. 2 years ago his was diagnosed with aortic insufficiency and at some point in life he will require a aortic valve replacement, but we are praying that is a lot later in life. 4 days post op his heart repair nurses discovered a lipoma (fatty tumor) above his sacrum on his lower back. After testing and a neuro consult Mason was also diagnosed with a Tethered Spinal Cord with Lipomyelomeningocele. He required spinal surgery at 8 months old where they removed his S1 and L5 vertebrae. A side effect of that surgery is that he lost control of his bowels and was diagnosed with neurogenic bowel and still requires wearing medical diapers. We have gotten a good 4 years out of his first release but unfortunately in January of 2019 he started complaining of leg pain and weakness that just progressively got worse. Then came headaches and a noticeable lump on his neck. We made an appointment with a new neurosurgeon down here in TN where we now live and after exams and an Mri it was determined that not only was Mason tethered again but he also now has Arnold Chiari Malformation grade 2, Syringomyelia (he has a large syrinx from C2-L3) so basically his whole spine length, and has neuropathy in his hands and feet. He requires surgery but do to the complexity of his case we were referred to numerous other surgeons for opinions on how to treat him. We traveled to Rhode Island, back home to Chicago, and Orlando, FL as well as sent his case file and images to St Louis, Chop in PA, Washington and John Hopkins. We got 2 opinions back that our choices were to either do nothing and let him lose all his mobility and sensory function at some point and be completely wheelchair bound for the rest of his life, or intervene and do surgery knowing he could never be completely untethered and have him come out of surgery with some deficiency but we wouldn’t know what until he started recovering. Advocating for my son will never stop and after searching a fellow spina bifida mom messaged me about Dr Andrew Jea and a spinal column shortening procedure he does for kids just like Mason and like her daughter (who had it and it was very successful). We reached out to Dr Jea and he wanted to see mason in person. We went out there June 11th for a consult and he feels this surgery will be just what Mason needs to help if not completely preserve his mobility but at least keep it for many many years to come. Mason will be having surgery in Oklahoma in the end of August and it will require us to be out there for a minimum of a week. A week of my husband being off of work unpaid who is our only provider and not being able to stay at the Ronald McDonald House like we planned because of the covid restrictions still and not allowing siblings there and we have to bring Hunter and Kristofer. I am still trying to figure out care of my older two as I will have to leave them behind because of school, sports, and not having enough room in the car for the ride home post op. I know it has hard times for everyone so please even if you can’t donate we would be beyond bless with prayers. Any money raised would go for gas to get out there and back, hotel fees for while we are there (5 days there or more) and an additional day of breaking the drive up on the way home as it’s 13 hrs straight if we don’t stop, food while we are out there, loss of wages as my husband has to miss work with no pay, and any other medical necessities Mason may need to get home comfortably.
We just want to thank everyone for all your support and prayers they are appreciated more than you could possibly know.