(Featured photo: Camp PHEver 2011)
This will be my favorite post to write because of how much this means to me!
Many of my PKU friendships started in August of 1997, 20 years ago and to this day my closest friendships have come from that summer.
In 1997 a group of amazing people had this brilliant, I may be biased, idea to create a summer camp for children and their siblings with PKU. With this idea Camp PHEver was born. By this summer I had never met anyone with PKU before that I could obtain a friendship with. We at the time lived three hours from majority of the social PKU events we were invited too and didn’t have the ability to get there, so this was a big deal to me and my parents. We were expanding our PKU support network.
Support networks are one of the most important things a PKU family can ever have! I have “met” many PKUers all over the world through Facebook and Instagram! But I digress, back to camp! August 1997 was the first summer of Camp PHEver at the time it was only a weekend long camp and the only thing wrong with it, it just wasn’t long enough but that summer I met my PKU lifelong buddy! We bonded over our mutual love for the Spice Girls (It was 1997, of course we did!) and our enjoyment for Hanson. This started a yearlong pen pal friendship, fun stickers and laffy taffy wrapper jokes; again it was the late 90s. Our letters would consist of formula stories and bragging rights about French fry dinners but more so excitement and longing for Camp PHEver.
Now 20 years later, my wonderful PKU pen pal and I do our best to stay in touch (and help each other out) but as adults and we have graduated to counselors at Camp PHEver and even dabbled in working the camp grounds as well. At one point we lived in the same small college town and even as college students tapped into our childhood with snow-day blanket forts, the classic formula conversations and friendship French fry dinners. We got to experience life together as young adults and now we still return to Camp PHEver to be counselors to provide mentorship to fellow PKUers and ensure we help them have magical weeks at Camp PHEver.
From 1997 to now, Camp PHEver has gone from treehouse style cabins to air conditioned ground level cabins, which are 100% accessible, walking on packed down dirt trails to cemented sidewalks to every activity imaginable, to a small bench style mess hall to large multipurpose dining hall, from 4 camper cabins to 8 cabins, and a small camper population of about 15-20 to home away from home for approximately 100 campers and counselors, most of which are PKUers or PKU medical providers taking their time off to mentor their patients!
Over the years my support system has grown from having just my parents and my sister to a whole other family of PKUers and their families and even parents of PKUers as I became a PKU adult. I am so happy to now be a mentor to many young PKU adolescents as a camp counselor and a PKU adult. I have helped start up many meet ups where PKU adults and PKU parents can come together and allow irreplaceable and extremely valuable information be exchanged. Word of encourage, hope and promise are spoken at these events. It is extremely important for the parents of PKUers to know, the time the effort and the occasional struggles are absolutely worth it and it will not go unnoticed or unappreciated forever. Though it is easy to see the value of tedious measuring, monthly blood draws, additional preparing and the extra planning is 100% worth it when you look at your child but sometimes the hope can feel diminished when a level comes back higher than anticipated or there is another battle with formula. Know it is appreciated and you may not hear it now, you may actually hear quite the opposite but these are growing pains. You will eventually hear the ever grateful thank yous, when they are capable of understanding and fully comprehending what you went through to make sure they grew up knowing they were capable of anything and PKU is NOT a hindrance on whatever they want to grow up to be in life. This is what support groups are for, to provide the not always apparent glimmer of hope and remind us why we continue to tediously take care of our loved ones or selves. Support: provide hope, reminding us we are not alone, encouragement, information, joy and ease.
Camp PHEver has opened the support system to me and even being a mentor to others encourages me to be the best role model I can be. It has helped me get through slumps when I didn’t think I could continue to go or I was being too hard on myself, I get a friend from camp who somehow unknowingly reaches out and helps me out in some way shape or form! What started as a small idea has become an ability for lifelong friendships based on understandings only a PKUers support network can provide and help with.
If you want more information on Camp PHEver camp for PKU children and their siblings you can get all the information at www.campphever.org or find Camp PHEver on Facebook as well.
Only 33 days until Camp PHEver 2017!