Henny
Age: 17
Hi my name is Henny.
I was born with a rare skin condition known as dermatosparaxis. My skin is extremely fragile and soft. Growing up always needing to be careful, refraining from many activities, getting countless bruises and always needing stitches was just a part of life. A life I got used to over time. At camp I met many friends who were like me.
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Although our diagnosis's differ in truth we are very much the same. There I met girls who also sat on the side by gym, who also had to be careful, and knew what it was like to be in the hospital. I have been blessed to attend camp for the past twelve years. But it wasn't until last year when I saw the power of the enormous support group I have collected over the years.
In December of 2015 I got diagnosed with an autoimmune disease called ulcerative colitis. It attacks me and pretty much affects every moment of my day to day life.
Both diseases continue to aggravate each other on a daily basis causing them both to be extremely complicated. Chai lifeline is an organization unlike any other.
It's not just two blissful weeks every summer. It's not Just special food brought to the hospital. It's not just the visits.
It's the volunteers who get you through the year and make camp the special place it is. It's the shabbatons, events and retreats for the whole entire family. It's that bond that you share with girls who understand as you sit around in the bunkhouse comparing side effects
And your funniest hospital stories. It's the friends that will last you a lifetime. It's that beat in my heart that won't stop beating.
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