Stories of NF: Oskar N.

At Oskar’s 2 week checkup we mentioned that he had a lot of birth marks (less than 10); by his 2 month checkup he was up to about 30 and we were referred to Seattle Children’s Hospital for further tests. The doctor confirmed with blood work when he was about 4 months old [that he had neurofibromatosis type 1].

As a parent who had never heard of NF, the original diagnosis was the most terrifying thing we have ever faced. Now, we are determined. We make sure that we encourage him to do anything and everything he wants but we are always watching and aware. Oskar is considered speech delayed but has perfect comprehension and knows how to communicate.

We think that the raising awareness is going to change the way that people see and treat our NF heroes. We participate in the Seattle NF Walk, we do local fundraisers, online fundraiser auctions, and we tell everyone about NF.

Oskar is now 2 years old and loves people. He loves to say “hi/bye” to everyone he sees. He loves music and dancing and we have our nightly dance parties before bed. He loves his new baby brother and loves giving him kisses and trying to walk him around the house like a big boy. He also loves to throw balls, or anything else, around the house.

-Elisabeth, Oskar’s mom