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NF Camp, A Parent’s Perspective

By August 1, 2016January 17th, 2024Featured

The 2016 NF Camp season is behind us. Two weeks of outdoor adventure, late-night bonding, fun and laughter, is now but a fond [Snapchat] memory. But it’s not only the young adults living with NF who benefit from the opportunities that NF Camp provides; their entire family feels the joy from knowing their child is safe, happy, and among their peers who understand. NF Mom Kirstin wrote to NF Camp Program Manager Julie about what the experience meant to her son Hayden and their entire family:

Dear Julie,

I just wanted to take this opportunity to write to you and to explain how grateful the Lynch family is for NF Camp and the experience of a lifetime that our son had last week in Utah with you all. Man, he hasn’t stopped talking about how amazing it was, and how and what he is going to do to try and get back to it next year! Plus all the amazing friends that he made – who he is already connecting with on Snapchat and Facebook! They will be lifelong friends and people with whom he can connect with at a very deep level.

Hayden just gushed about his experience at camp. One of the poignant things I feel he said, was he described a doctor coming to camp to answer questions about NF. He excitedly told me that the constant itching he has is a sign of NF! He was so happy to have this explained to him. I think this was an exceptional idea; Hayden never really talks about his NF and this put it out into the open for him – thank you for arranging this.

At no other time in Hayden’s life can I truly say he has felt so accepted and that people were not constantly judging him for what he can or cannot do. He felt so wonderful not having to explain repeatedly why he is taking so many medications, or what his disabilities are and why he is the way he is. He talked about this wonderful feeling of feeling free and feeling like he could just “be.”

From a parental experience it was exceptional knowing that the camp understood NF; that I didn’t have to write a 20-page essay describing the disorder and how it affects Hayden. It really doesn’t matter how much people say they understand – they do not and you inevitably find out from your son that comments were made that make it obvious that they didn’t listen or read a thing you told them. It was a delight to have that feeling that he was safe and understood and that nobody was going to think he was being a killjoy for not joining in with an activity (because he physically cant rather than him not wanting to).

It also enabled us as a family to connect with our daughter Charlotte. Who, without complaint, always lives under the shadow of NF and how it affects what we can and cannot do as a family. For example, because Hayden does not have the strength or stamina to ride a bike we have never gone on a family bike ride together. It’s the simple things in life, but we went for a 10-mile bike ride with Charlotte as a family and she was bursting with happiness! We spent time just connecting with her and letting the days be about what she wanted to do. Precious moments and time – thank you!

We are truly grateful that this camp exists and how it is an experience these kids will cherish for a lifetime. It is with uttermost gratitude that we thank you from the bottom of our hearts for making this camp happen!

See you next year!
Kirstin, Brendon, Hayden and Charlotte Lynch

Visit for information on the 2017 sessions.