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Nicky goes to Camp Wonder!
Camp
Wonder is the brainchild of Francesca Tenconi, a teenager
who, at 16 year of age, founded the Children Skin Disease Foundation (CSDF)
and raised more than $100,000 to support research, awareness, and a summer
camp for children with skin diseases. Francesca's story is nothing short
of remarkable. At 11 years of age Francesca was diagnosed as one of the
youngest people in the world with Pemphigus Foliaceous , a condition that, according to her dad,
resembles RDEB. PF lies dormant in a patient's system until something
triggers it, in Francesca's case it is feared a bee stung caused the
condition to raise its ugly head. While in RDEB the collagen is not
produced enough by the patient, in Francesca's PF a bacteria (? Please do
correct me if I am wrong!) attacks the collagen. Part of the trouble at
first was getting Francesca diagnosed, but once she was, her Pemphigus
blisters have been controlled by chemotherapy.
Francesca had the opportunity to attend a special camp in Minnesota for children with skin diseases, and afterwards, she decided she wanted to provide a similar experience to kids in California. "Many of these children are born into a world of pain, disfigurement, and social rejection," she explains. With a camp of their own, "They would be free to swim and participate in camp activities without embarrassment." Children with skin conditions like EB, Ichthyosis, Psoriasis, etcetera attended the camp's first year in 2001, and it's been going on ever since. Francesca enlisted the help of volunteers to become counselors for the children, and nurses for the med shed. Francesca, now 19 (as the writing of this article, August 2003) is accompanied by her parents and some of her family members to camp to help out every year and make sure everything goes smoothly. June 2003 was the 3rd year for Camp Wonder, and it involved 74 children, 36 volunteer doctors and nurses, and over 60 volunteer counselors and staff. This is the first year that I thought my son Nicky, 6 years old, was old enough to attend. While perhaps he was still too young to participate in some activities, and the condition made him unable to participate in others, I know he still had a good time and is looking forward to going again next year. I am also in the hope he will be able to go by himself within the next few years, but I know it will be his decision and if he does not feel comfortable having someone else do his bandages, I have no problem accompany him to camp. Mom has fun too ;-) We bunked in a cabin with mostly other moms, and 3 of the moms had their children sleep in the same cabin. The other moms had older children (over 10-11) that slept in another cabin with their peers. Camp started on June 22 and the way they worked things out, was having different activities for Younger Girls, Younger Boys, Older Girls and Older Boys. After everyone was checked in, unpacked and set up in their Cabins, the activities started. This first day Nicky played a lot of video games but he did take a break to go do some arts and crafts with his counselor, and he made a quilt square with lots of glitter. Other kids went swimming beforehand, but Nicky wants nothing to do with the pool...plus, if he did, he would know we would have to change his bandages afterwards, and unless it's bandage change day, I doubt he would go swimming so willingly in the future either! In the evening there was a Scavenger Hunt as an Ice breaker and a Campfire with s'mores... since Nicky was begging me for s'mores for months and I told him we'd surely have some at camp, I was possibly more thrilled than he was (and he was thrilled!) I knew I did not lie to him! LOL
The next day, June 23, a Monday, after breakfast, many kids went playing
Volleyball or Soccer or did some swimming, while Nicky spent a lot of time
playing with other kids either videogames or other table games. In the
afternoon we all went to the Reservoir for a boat ride and Nicky had an
absolute blast! He was able to drive the boat for a short while and did
not want to leave. After getting back from the lake Nicky did squeeze in
more play while the other kids went swimming. In the evening he had a
great time watching the Camper and Counselor Talent Show. Many children
sang songs that brought tears to everyone's eyes, such as "Heroes" and "My
heart will go on". Who can possibly forget Lizie's performance of "My
favorite things" or Corey's "You will be in my heart"?
Photo: Nicky at the Reservoir driving the boat! On Tuesday, June 24th, the other kids were involved in Ropes and Softball activities while Nicky did some arts and crafts. Nicky spent a lot of time with Garrett, another little boy with RDEB like him (they are only 2 months apart) and playing lots of table games such as Connect 4 and Hungry, Hungry Hippo, but the in the evening Nicky had a blast watching bunk skits. This was also the day that Nicky had to take a bath and change all his bandages... not a fun thing to do, and actually a quite painful thing to do, but, alas, he was a trooper as usual. Every evening, after dinner there was some sort of talent show or event, and that made the whole experience a lot of fun. On Wednesday, June 25th, it was the start of the Olympics (Swim meet, Track meet, Archery, Basketball), and while Nicky did not participate to the events taking place, he was still made part of one of the teams and given a medal at the end of camp. This made Nicky really proud! What made Nicky's day though was the opportunity of riding in a little horse trained carriage. He got to wear a little hard hat and went around a little field, he was thrilled. Later in the afternoon we went back to the Reservoir and this day, being just a tad bit warmer than the trip before (OK, a LOT hotter!), even with the wind it became a need to get Nicky under a wet towel. He looked pretty funny! Mommy did put her feet in the water and others shed some clothes, but all in all it was still a fun day at the lake. Later that evening was Casino Night! Kids were dressed up in Pirates gear (hats, bandanas, rings etc) and Nicky was given fake money to play all the different games. If he won he would be given a token to redeem for free toys. Nicky had tons of fun and actually spent most of the time with his counselor playing Casino games. On Thursday, June 26th, most of the day was spent by most of the campers in Olympic games such as Apache Relay, Soccer, Volleyball, Track Meet, Flag Football, Basketball and, of course, Swimming. The final Olympic event was the Bucket Brigade. Nicky for the most part played indoor games, such as Playstation games or foosball or Connect 4, it was really hot outside in the afternoon! A motorcycle club came by this afternoon and offered rides in the big 'ol cycles to all the kids, and while Nicky was too scared to go, he still had fun looking on! In the evening there was a Carnival event and everyone was given luau items to put around their necks, writs and ankles with all kinds of different bright colors. Nicky played some of the carnival games in the afternoon while they were setting things up with Garrett and he had a blast! During the event Clowns came around to blow up balloons for the children (the kind that can be transformed in different shapes) and again the children were given fake money to play all the different games. If he won he would be again given a token to redeem for free toys. Nicky was though given tokens even if he did not win the game, ha ha.
Friday June 27th, was the last full day of camp, and it started for the campers with Cabin Wars and Challenges. After lunch there was a celebration for Elaine Taylor's birthday (of the Taylor Family Foundation which built the Camp Arroyo where Camp Wonder is located) and while many talented campers sang or read poems, Lorraine (mom of Garrett) presented her with the Quilt she had been working on for the past several days. It was very special! In the afternoon there was more Swimming and Arts and Crafts, and Nicky helped mommy make some things like decorating little bags and drawing. The evening was Dance night, and the moms were treated to dinner at a delicious Italian Restaurant. The children that were younger than a certain age that did not like the Dance could stay in the med shed and watch videos. Saturday morning, June 28th, was the day we had to leave. Before leaving though there was an Award Ceremony in the Cafeteria, and Nicky won the 'Most lovable camper' award :-) Awww... it was a tearful goodbye as Erin, Nicky's counselor, had to leave, but we will always have the memories. We packed, grabbed the bagged lunch and off we went.
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EB Info World was Created on 11/20/1997 - Background Ribbon Graphic by Dominic
Gionfriddo
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