The story of Vanessa
This is Liam, He’s my beautiful son who was born with not only Neurofibromas type 1 which affects 1 in 2,500 people but also another Rare condition called Congenital lobar emphysema which affects 1 in 30,000 people. When people hear the word emphysema they automatically associate it with smoking. It’s actually a lung condition he was unluckily enough to be born with. When Liam was born straight away he wasn’t breathing so he was rushed to NICU on life support then transferred to another hospital that could find out what was wrong. Finally at 24 hours old they found out what was wrong and at 27 hours old he had a right middle lobectomy. That fixed his lung condition but he still has breathing issues regularly due to CLE.
When growing up Liam was always a lot sicker than other children as he had a low immunity. Liam was diagnosed with NF1 before his 1st birthday. We knew he had it because his case was hereditary alomg with his older sister also being diagnosed with it. Once they counted his Café Au Lait spots along with the strong family history they said he also had it. He’s Spent a lot of time in and out of hospital, Doctors and specialists. He’s now dealing with a lot more complex issues because this is a degenerative disease and there’s no cure for NF at all. Neurofibromatosis affects everyone differently, Some people go through life not knowing they have it and others have such complex needs that they’ve had several surgeries before their 5th birthday. The type of NF Liam has caused tumours to grow all over his nerves, Learning disabilities, ADHD, Scoliosis just to name a few of the conditions affecting Liam now. Despite all that’s going on he still has such a brave attitude to life. I always tell him He might have NF but NF doesn’t have him so don’t let it define you and the incredible person you are. He’s my little warrior for sure.