WARNING THIS MAY BE DIFFICULT TO READ.
A few weeks ago we shared the story of Ina, an older woman with NF1 who is a retired attorney. Ina showed that people with neurofibromatosis-1 can lead long rewarding lives. While we wish we could always share only stories of hope, unfortunately NF1 is a very complicated, random disorder and we are obligated to share the truth in order to educate people about NF and to increase awareness.
Today’s story is a very sad one about Caitlin Ostrom who passed away last November at the age of 20. It was written in heart wrenching detail by Caitlin’s mother and fulfills a promise she made to Caitlin to share her story.
As a mother of two young adults with NF1 it really pulled at my heart; it also scared me. I thought how can we possibly share this with NF families? It’s so harsh and frightening.
Then I thought how can we NOT share this? Caitlin and her mom, Christine, felt so strongly about getting the message out about the possible realities of NF1 and they have such important lessons to share.
So I contacted Christine and told her my concerns. Once again she shared her lessons. Here is what she said:
“I know our story is extreme, but its happening everyday to others. It’s not the norm but it is possible for any person out there with NF to develop one of these life threatening problems period. The only way to have a chance to stop it is through constant monitoring even when everything seems great…I wish I had known the real possibilities…Nobody ever explained how severe this could get and that we needed to stay vigilant, it was just something she had that she struggled with that would cause her problems, but I never imagined cancer…it was so played down as a low chance that it didn’t even cross my mind…I wish no matter how hard it might have been to hear, all of this, that I knew. People have survived these but not unless it was extremely early intervention but we could have had more time with her even if it was unstoppable.”
Read Caitlin’s story if you can (Warning: it may be upsetting to some) and share it. It is a good account of the devastation of NF and what many with terminal illness and their families have to bear. And PLEASE consider donating to Christine’s page and passing it on. They’d love to shatter our Naperville Great Steps 4NF walk record in both funds and walkers.