My name is Rebecca. I am doing this fundraiser to raise funds for medical help for my husband, John. My husband is on disability. He was diagnosed in his younger years with scoliosis and neurofibromatosis. His spine was a backwards S. He had a rod put in. Doctors said he’d never be able to work, but he proved them wrong and worked from age 16 until he turned 53 when he had to apply for disability.
In 2020, he was hit by a drunk driver, and in the process of getting him checked over, they found a mass at the base of his skull and he has one behind his lung that is pretty large. The ER doctors said in all fervor that he needed to see a neurosurgeon ASAP. His doctor at the time was made aware but was slow to get the referral in. He switched doctors and finally got in to see the neurosurgeon, but they needed updated MRIs done. Since we are on a fixed income and his insurance is through Medicare, he has to pay for scans to be done and he has to pay it upfront.
In Sept last year, he was diagnosed with CHF and is now on oxygen. He has severe headaches where the mass is. He has coughing spells that cause him not to be able to breathe and then cause seizures. He has also been diagnosed with sleep apnea that is also causing issues but needs to have a sleep study done. Being on a limited income makes it hard to cover these extra medical costs. I was trying to not go this route, but his headaches are getting worse, as are his breathing issues and back pain. It’s now become more dire for him to get this done. On top of this, he also needs the scans done for a spine specialist as well, as he is also shrinking now and the rod in his back is pushing up on his neck. If they have to remove it, he will have to learn how to walk all over again at his current age of 59.
Our granddaughter is very worried about him. They are very close, and she’s so worried she can’t sleep at night sometimes. She takes care of him when she’s here, and she’s only 11. I’ve included pictures of his head with the neurofibromatosis on it taken June 12, 2025. This has progressed immensely since 2019.
We greatly appreciate anything to help towards getting this done. Ty and God bless!
