Help Mason keep walking

My name is Samantha and I am the proud & blessed mom of 5 handsome boys. This is not easy for me to write, let alone ask for help because of pride as I have always done things myself but with that being said we are at the point where help is what we need.

For those of you who don’t know Mason’s story let me explain his journey. When Mason was born in July of 2014 he was born with multiple congenital heart defects that we were not aware of. That required him being transferred by ambulance to the children’s hospital in Chicago where we lived at the time for cardiac surgery to save his life. At 7 days hold he had surgery to repair his Coarctation of the aorta and close his PDA. We were told that he still has a small ASD and also had Bicuspid Aortic Valve disease and at some point in the future would need another surgery to replace his Aortic valve. While recovering from him cardiac surgery we noticed a lipoma had started to develop on his lower back and Drs did an ultrasound where it was then discovered that Mason has a tethered spinal cord with lipomyelomeningocele. At 8 months old he had an untethering surgery which helped his movement but unfortunately a side effect from that surgery is that he lost his bowel and was diagnosed with neurogenic bowel requiring him to wear medical diapers.

Mason got about 5 good years of relief from that surgery before having pain complaints at 5 years old. We now lived in Tennessee and we’re with a new neurosurgeon who ordered updated testing where it was discovered that Mason was retethered again but now also had Arnold Chiari Malformation and Syringomyelia ( he has a syrinx from his cervical column all the way down to his lower lumbar spine). We were given to options of either surgery or keeping him comfortable with pain meds and overtime he would lose all mobility and be a paraplegic for the rest of his life. Only being 5 years old we knew we had to fight for him and do whatever it took to get him help which involved traveling to numerous states and seeing top rated neurosurgeons to help him. 4 out of the 5 drs told us that Mason has a very complex and complicated case and that we could never cure/fix him as Mason’s spinal cord terminates in his lipoma and to fix him his lipoma needs to be removed but we would then be severing his spinal cord and taking away his sensory & mobility functions forever. The one dr who offered us hope was Dr Jea from Oklahoma Children’s Hospital where he would perform a spinal column shortening surgery to give masons spinal cord more movement relieving the stress & pressure on it. We proceeded with that surgery in November of 2021 where he took out T10-S1 of his spine and placed rods & screws for support. Mason did well with recovery and this was suppose to get him many many years of relief, if not life long. Unfortunately that is not the case. Mason started experiencing pain again in December of 2022 and we were back in Oklahoma in February of 2023 to meet with Dr Jea and the pain team to figure out what was going on. At that appointment he was diagnosed with Neuropathy in his hands and feet with decreased feeling in those areas and was placed on nerve medication to try and help provide relief. By mid March his pain had increased, we had new symptoms appear and it was determined by the team that Mason now has Complex Regional Pain Syndrome and Failed Back Surgery Syndrome. His pain is intense, most days he stays in bed, can’t or won’t walk because of the pain. He has been having chest pains especially at night so he’s afraid to sleep in fear he won’t wake up. And now suffers from pressure headaches. He cries because he just wants to be normal and doesn’t have a day where he isn’t in pain. He is now on Lyrica to try to help and now needs another procedure to be done in Oklahoma to place a Spinal Cord Stimulator to help with pain and bide him time before he will need another spinal column shortening.

This has been extremely hard for Mason and our family. He feels guilty that he has all these problems and doesn’t want to get things done as he says it’s too expensive, that he’s not worth it and doesn’t want to put financial stress even more on us which breaks our heart. We will do anything for our son for his happiness and to not be in pain. With that being said Eric is the only one who can work as Mason needs constant care due to being a fall risk. Times are so hard for everyone right now but especially a 1 income house with 5 kids. We’re just not making it anymore. Eric had to take a new job 8 months ago to get the medical care to cover Mason’s conditions and I doing that had to take a pay cut. He’s been applying for new jobs with no luck yet.

We are 2 months behind on our mortgage, our cell phones are in the process of being shut off and that’s our only phones, our only car which gets Mason to all his appointments had the transmission go costing us $3500 to repair (hence why we’re behind on house) and it just went out again 1 month later. The part is covered under warranty but not the labor money. I’m also out of a car till mid to late May. Bills are piling up and he has another surgery coming up in June in Oklahoma to relieve his pain hopefully and try to preserve his mobility as long as we can. He now has to get fitted for a motorized wheelchair which the insurance doesn’t cover all of. He also has multiple specialist appointments coming up to determine if he has pediatric rheumatoid arthritis or any other genetic conditions.

We sadly really need help and prayers. I have tried applying for state assistance and living in Tennessee with the poverty level being high we don’t qualify for anything. I have no where else to turn but to our friends, family, community, and kind people for help. Thank you and god bless ♥️