Matthew Robinson

"Matt was diagnosed with NF1 at age 1. His was spontaneous, no family history, and we had no previous knowledge of NF. When heard/read that it's a highly variable disease and looked at our son who appeared healthy, we naively put it out of our mind and decided he would be fine. Unfortunately, Matt was later diagnosed with Wilms Stage 4, pediatric kidney cancer, when he was just over 3 and his brother, Isaiah, was 4 months old. Matt had 5-6 relatively "quiet" medical years, before a complaint of back pain revealed the start of his NF tumor around his lower spine. Matt's tumors are all internal and all benign at this point. Each scan finds new ones and growth of the existing ones. We've been told he has well over 100 tumors. They surround his spine all the way up into his neck, are in both brachial plexus (shoulder areas), chest, pelvis, both legs, and a scan this past month noted a new brain lesion that might be a minor NF lesion/finding but malignancy couldn't be excluded and a follow-up MRI is advised for 3-6 months out.

In August 2023, it was determined that a tumor that was in the base of his spinal canal had grown to a dangerous point. Matt was admitted into the hospital on 7/10/23 where oncology and neurosurgery developed a plan. The surgery would likely pose mobility risks, but not doing it quickly enough would likely mean permanent mobility loss. On 7/26/23, two neurosurgeons operated on Matt for 7 hours and had to decide on a more conservative approach of removing just part of the tumor in order to damage the nerves less. We are very happy with his progress and healing! He was discharged and is moving around a bit at home while waiting to have his stitches removed in 3 weeks. He definitely has a limp and some pain walking, but that might get worked out more with time and possibly physical therapy, but is still much better than we had been prepared for.

Other than constant but mostly manageable back pain, he had a decent past year, working part-time while getting closer to starting college, spending time with friends and a new girlfriend.

B Kind provided Matt with a new laptop to help him start college in the fall, as well as grocery assistance to assist the Robinson family.

"Matt just received the computer and is working on checking it out and setting it up now!!! It does my heart good to see him not worrying about the pain he is in and what's next with his tumors but rather what else is also in his future!! The fact that someone else out there wanted to gift this to him has sparked excitement in him about getting enrolled in his first college class. Please extend our thanks to your staff, volunteers, your board of directors, and especially, your generous donors. Also promise them that, just as we have in the past, we'll continue to find ways to give back our time and resources to organizations like yours that are supporting families affected by Neurofibromatosis and cancer."