|prep sketch for painting|
Larry's mother passed away a year after he graduated high school. She was 45 and he was 17. She was a quiet lady and never discussed NF with him. She had fibromas all over her body. Larry knew he had it too but didn’t ask her as she avoided the conversation. When he was in his early teens, his mom was diagnosed with breast cancer, she waited too long for treatment and it eventually took her life. Larry lived with his sister for about a year after their mother's death, until he found a job and apartment. He is thankful that his sister does not have NF. She really helped him transition from being a young teen to living on his own at 18.
Larry didn’t start getting fibromas on the outside of his body until in his 20’s. Scoliosis had a major impact on his life so any type of sports were out of the question. He found a great Neurologist that knew all about NF and understood the problems people can have with it. He started taking x rays and MRI’s of his back and brain. He prescribed me some medications to help with the pain and a brace wrap to help with support since it appeared his ribs were supporting his scoliosis at an 80 degree curve which is why he was hurting all the time. Any corrective surgery was out of the question, it would be a high risk since he has a meningocele on his spine. I have to be really careful, the doctor said not to fall, sneeze or cough hard, not wanting the meningocele to leak spinal fluid. The brain MRI discovered UBO’s in his brain (Unidentified bright objects). They say all of us with NF have UBO’s, they just have no clue what they are. Also at the base of his brain and spinal cord there is a Posterior Fossa Arachnoid Cyst. Larry gets tired and short of breath if he stands for any length of time or walks. His ribs hurt due to the scoliosis. He uses a cane for support, helps some take the pressure off. For any distance he uses a power chair, at the store or at the park.
Larry got married at 25, and had a daughter a few years later. He was so glad she was born without NF. Sadly his marriage ended a few years thereafter. A year after his divorce his ex-wife was diagnosed with MS and she passed away 10 years later. Larry remarried and had another daughter with his second wife. She also doesn’t have NF. Sadly, his second marriage ended after 12 years. Being depressed the he would never find anyone, he found the Children’s Tumor Foundation's website. They had a link where there were others that had NF like him. He talked with others and found comfort as they all understood each other. Then there was one lady, Joan, they connected. She lived in PA and he lived in MS. They started talking on the phone, and he made a trip up north to see her. A year later she made the big move to the south and year later they were married. Larry is thankful for her. They are both involved in the "Great Steps for NF" walks put on by Neurofibromatosis Network. They have participated for four years and plan on continuing to raise NF awareness.