Welcome to our CaringBridge site. It has been created to keep friends and family updated about Jackson. My son Jackson was born in October, 2004, full-term, healthy and strong. In the first months after birth Cafe' Au Lait spots began to appear, little coffee with cream colored marks that aroused little concern out of me. Around 6 months or so I asked the Pediatrician about them. He told us that they are usually nothing to worry about, but they are associated with a pretty serious genetic disorder, so don't panic if you look it up on the Internet. Of course I looked it up, and of course I panicked. By the 9-month check up I had quieted myself and fully expected to be told why I shouldn't worry. Instead we were referred to the genetic doctor, an NF specialist. At 12-months we met with the NF Clinic at CHMC. They were 99% sure it was NF-1...later confirmed by genetic testing. We went for further testing, a sedated MRI of the head and eye orbits. I never really grasped what the MRI reading could/would show...an Optic Glioma, a tumor on the Optic Nerve. Again, I was expecting to be dismissed with that one precautionary MRI, ruling out the presence of any "complications." I prayed that it wouldn't grow, but sometimes was too overwhelmed to remember to pray, too paralyzed by fear to get the courage to ask. That Optic Glioma remained stable and basically resolved itself. Just when we were about ready to decrease the frequency of MRI's that started to see swelling of the ventricles and a glioma on the tectal plate. Since then he has had 3 different brain surgeries and hospital stays. He had an ETV, a right VP Programmable Shunt and now most recently (May, 2013) a bilateral VP Shunt with a a right valve. Additionally we found through the first surgery that his skull cracked from just putting on the brace for surgery. That led to a full body dexascan and a diagnosis of Osteopenia. It's Osteoporosis by adult standards but there isn't really a standard for a child and he hasn't had any other fractures. He does very well in school, has good social skills and is calm. We got lucky on some things I guess! He really is an awesome, joy filled person.
Please help us to pray for Jackson, for things to be better and for the strength to go through that which is not better. I pray for the Grace to be as strong as that little boy needs me to be. By visiting this site and thinking of us you are helping to give me the courage and strength to make that happen. I thank you for that. For More Info on NF1: Neurofibromatosis type 1 (NF-1), also called von Recklinghausen's disease, is a rare genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas) and areas of abnormally decreased or increased coloration (hypo- or hyperpigmentation) of the skin. Areas of abnormal pigmentation typically include pale tan or light brown discolorations (cafe-au-lait spots) on the skin of the trunk and other regions as well as freckling, particularly under the arms (axillary) and in the groin (inguinal) area. Such abnormalities of skin pigmentation are often evident by one year of age and tend to increase in size and number over time. At birth or early childhood, affected individuals may have relatively large benign tumors that consist of bundles of nerves (plexiform neurofibromas). Individuals with NF-1 may also develop benign tumor-like nodules of the colored regions of the eyes (Lisch nodules) or tumors of the optic nerves (second cranial nerves), which transmit nerve impulses from the innermost, nerve-rich membrane of the eyes (retinas) to the brain. More rarely, affected individuals may develop certain malignant (cancerous) tumors. NF-1 may also be characterized by unusual largeness of the head (macrocephaly) and relatively short stature. Additional abnormalities may also be present, such as episodes of uncontrolled electrical activity in the brain (seizures); learning disabilities; speech difficulties; abnormally increased activity (hyperactivity); and skeletal malformations, including progressive curvature of the spine (scoliosis), bowing of the lower legs, and improper development of certain bones. In individuals with NF-1, associated symptoms and findings may vary greatly in range and severity from case to case. Most people with NF-1 have normal intelligence but learning disabilities appear in about 50% of children with NF-1. NF-1 is caused by changes (mutations) of a relatively large gene on the long arm (q) of chromosome 17 (17q11.2). The gene regulates the production of a protein known as neurofibromin, which is thought to function as a tumor suppressor. In about 50 percent of individuals with NF-1, the disorder results from spontaneous (sporadic) mutations of the gene that occur for unknown reasons. In others with the disorder, NF-1 is inherited as an autosomal dominant trait.
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