Sunday, April 7, 2013

NF Connections

Sometimes...You connect with someone in the most unlikely of places.

I typically don't respond to things on Freecycle, or Craigslist....Because as my hubby would say "We have ENOUGH STUFF!"  But there are times I just can't help myself. :)

Something came up on Freecycle, and I responded, hoping that the item was still available....It was.

I responded with a pick up time using my personal e-mail address, which happens to say "Thriving with Neurofibromatosis" and gives a link to this blog....

The woman wrote me back, with a time to meet....but the e-mail continued, with a lengthy response about how she clicked on my link and was led here.

Her son was JUST diagnosed with NF last week and as she explained, she was overwhelmed, devastated and heartbroken.  That is until she read blog post after blog post that proved to her, that this diagnosis is NOT the end.

Like a few weeks ago, when a letter was left on my van, from a mother distraught from this diagnosis, I have made a new friend.  (Read that post HERE)



  1. Kristi,

    I see your van every day at school were our kids attend together, but I've never stopped to say hi. Like you, we're always off to somewhere and there just never seems to be the time. The store, an appt, the hospital, always something more important than a momentary chat in a elementary school parking lot. I know Sara was excited to know that there are other kids at her school with NF. And when I enrolled Sara there, I didn't know your kids attended as well...just that you lived so very close to us. I have no idea if Sara has met your kids, or spent time with them at school But just knowing they're there with her seems to make her feel less alone.

    So to you and your beautiful children, thank you! Hopefully we'll see you soon at the next CTF event!


    1. I have been meaning to talk to you as well. My 10 yr old daughter Rachel, was Sarah's study buddy a few times. Rachel was excited to meet another girl with NF, and they got along beautifully!
      Email me at and we can work out meeting up...Even if its just briefly.

      Every time I volunteer at the school and see your daughter...She always has the biggest smile on her face...That says A LOT. :)

      I wish you the very best...And hope to become friends :)

  2. Yep, with as common as NF is, there sure doesn't seem to be too many around....until you meet someone and then it feels like 'small world'.

  3. I am 62 and have nf. Tumors all over my body and my scalp. My son also has it the tumors grew around his leg and made that one leg longer than the other. We found out when he was three weeks that I had passed it down to him. I was told not to have anymore children and that my son should not either. My sister had it and she had curvature of the spine had to have surgery and wore a body cast. She finally died from her problems with nf. One brother has it the worst he has the tumors that are really large. He just had one removed from his leg that was about the size and shape of a football. He is blind from nf. I now have cancer and is taking chemo. I wonder if taking chemo might kill some of the fibromas?