Help kids with facial differences become leaders

 
$24,974
$40,376
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Jul 10, 2014

We All Have A Story To Tell

Kariym
Kariym

After I was born with Treacher Collins Syndrome, my parents became walking encyclopaedias of medical information. Yet, they had no idea what having a facial difference would mean for me as a child, or for them as parents. Through AboutFace, they found reassurance that despite the challenges that lay ahead – with love and dedication, we could navigate a world that often forgets that each person is worth so much more than their appearance alone.

AboutFace taught me that I was not alone in having a facial difference, and that I shouldn’t be ashamed. I learned how to advocate for myself, how to teach others about facial differences, and how to express what mine means to me. Eager to give back, I have been an avid AboutFace volunteer for the past 14 years. I’m always happy to speak publically on medical or family panels, and to discuss my experiences with Treacher Collins with kids and teens with TCS, and their parents. I know that each moment that I spend helping AboutFace to reach their goals, I am making a difference in our community and our nation.

Thus, when I was invited to become a camp counselor during a gap year between degrees, I was excited. I was also nervous, however, as I hadn’t attended the camp as a teenager. I simply did not know what to expect – I wasn’t sure what role I needed to fill for the campers, or how to ensure that they got the best camp experience possible. What was certain, though, was that I wanted to show campers that a facial difference should never hold them back from reaching their fullest potential!

In my time as counselor, I realized that many individuals have unique facial differences, and that all of us have a story to tell. Our campers continually demonstrate remarkable strengths of character and aptitude. I learned a little about food, electrical engineering, camp flora, and even some new jokes. But I also learned that campers have concerns about bullying, relationships, and even their careers. Together, we share our experiences and help each other grow. Like me, campers get to realize that they aren’t alone. We do this all while forging new friendships and helping to prepare ourselves to face our daily challenges.

It is this sense of community that makes Camp Trailblazers so wonderful. As children and adults with facial differences, we have to mature more quickly as a result of our day-to-day experiences. Camp Trailblazers is a place for campers to be who they really are, be their own age, and remember that they are all young people with heart, passion, hopes and dreams. Trailblazers leave camp knowing that they are unique individuals living with a facial difference – not defined exclusively by their face. That gives me hope that one day, each camper will reach their true potential – something I’m proud to help them achieve.

Kariym has been a dedicated AboutFace volunteer for many years. He has spoken at various conferences, played piano for several AboutFace events, and of course has been a wonderful Camp Trailblazers counselor. We are so proud to have him in our AboutFace family! Thank you Kariym for all that you do!

Kariym and Camper
Kariym and Camper

Links:

Apr 7, 2014

Shannon Goes To Camp!

Shannon at Camp
Shannon at Camp

I went to camp Trailblazers this year because I went to the camp previous years before this year and I loved it! Each year the experience of camp is so amazing and so much fun. I meet new people each year I go and I see old friends from past years that I reunite with; with the same friendship we had last year (like Rebecca and I did this year). The activities are so much fun and some of the activities gets people miles out of their comfort zone and you get to do stuff you never would at home.     

Since I started coming to camp I’ve been handling getting stared at and getting bullied better because the other kids at camp give advice on how they deal with that. I text a lot of the friends I made at camp and we can talk about it and it makes me feel better. I’ve also become more confident in myself and I’ve started doing the things I love like working out and dancing. I am making more good friends because I’m putting myself out there more.

No other camp just has kids with facial differences, and a lot of camps aren’t in September - late October! Also, other camps don’t have the types of activities trailblazers does. I’ve never made really close friends so quickly before at camp either!    

If there was another child thinking about coming to camp for the first time I would tell them they should definitely go and there is no other camp like it! I would tell them the kinds of activities we did in past years like rock climbing, canoeing, and zip lining! I would be their camp buddy and introduce them to my old friends and help them have a fantastic time at camp.

I was sad that the camp in Alberta didn’t go this year but I loved the camp in Vancouver! I got to meet kids that I wouldn’t have at the Alberta camp. We got to go swimming in the Pacific Ocean (It was freezing)!

Rebecca, Greg, and Colleen and I all went to Stanley park the first day we were in Vancouver for a 3 hour walk! The flight there was so much fun and we took two buses and a train because we took the wrong bus once on the way home! Of course I would do it again! I wouldn’t miss it for the world no matter where the camp was I was going to!

My favourite parts of the B.C. camp was the scenery - it was so beautiful there; jumping in the ocean 1000 times, kayaking for the first time, and of course meeting a bunch of great people who all have a facial difference like me!

Shannon flying to camp!
Shannon flying to camp!
Shannon swimming at camp
Shannon swimming at camp

Links:

Dec 17, 2013

"I'm a normal teenager because of AboutFace"

Callum Baby
Callum Baby

Hi, my name is Callum. I’m 13 years old and I was born with an incomplete bi-lateral cleft lip and a complete cleft palate. I didn’t have a lip like most babies and I didn’t have a roof in my mouth.
The cool part was that I could stick my tongue through my nose from the inside. The part that sucked was that I couldn’t suck my soother or drink from a normal bottle. My mom had to use a squeezy bottle and squeeze my milk into my mouth.

I’ve had nine surgeries since I was born. I had my lip reconstructed when I was 4 months old. Then I had my palate fixed when I was a year old. If I didn’t get my palate fixed, I would never be able to suck a straw or blow up a balloon. There were some minor surgeries like a rhinoplasty and ear tubes before I had a bone graft, which took a piece of bone from my hip and put it into my upper gums. That was when I was 8 or 9 years old. But unfortunately, it didn’t take and I had to have that surgery again when I was 11. Now I can bite an apple or eat sour soothers and not have my teeth move around. I used to have teeth in my palate, but I had to have chains attached to them and the dentist tightened the chains all the time to pull them into where my eye teeth needed to be. Now I just have braces.

So doctors can fix all of that. They can make me look like a normal kid to the best of their ability. But I’m one of the lucky ones because my cleft lip is one of the rare ones – bilateral means TWO or BOTH SIDES – so my cleft is more symmetrical than some other kids. But all of the surgeries in the world can’t make you look in the mirror and like what you see. That’s where AboutFace comes in.

When I was 10 years old, my mom asked if I wanted to go away to camp for a few days. Camp Trailblazers is a camp for kids with facial differences. I was scared. I had never been away to overnight camp before. My mom arranged for one of the kids, Amanda, to chat with me online. I learned we had a lot in common and I started to get a little bit excited about going to camp.

At camp there were lots of fun things to do like trampoline, capture the flag, canoeing, geocaching and even horseback riding. I didn’t like horseback riding. I thought that I was going to hurt the horse. You see, I’ve always been bigger than the average kid – and when my mom took me to ride on the ponies when I was little – the man wouldn’t let me ride. He got out his scale and embarrassed me in front of everyone. He said that I was too big and I would break his horse’s back. But Dan, who is one of the counsellor’s at the camp – encouraged me to try it. He supported me and made me feel strong. So when I got home, the first thing that I said was, “Mom, I rode a horse” My mom cried and I really didn’t know why.

Callum Toddler
Callum Toddler
Callum Now
Callum Now

Links:

Dec 3, 2013

"My first year at Camp. It won't be my last!"

Vanessa
Vanessa

I’m a pretty normal 15 year old in Grade 10. I have a pesky little sister, she’s 13. I love my dog Coda. We like to call him our ‘brother’. He’s a little shih tzu (that sounds funny if you say it out loud). I go to high school so life is busy.

I wasn’t born with a difference but I have one now. It wasn’t an accident or trauma that caused my difference. I have Juvenile Arthritis that has affected my joints particularly my jaw and the shape of my face. When I was 9, we discovered that my jaw was only the size of a 5 year old. That was because my jaw joints were eroding away.

The doctors are planning to operate on my jaw in the near future. They’re just waiting for me to stop growing. I’m looking forward to my surgery even though I’m a little scared because I really want it.

I still get frustrated about having Juvenile Arthritis and I can unleash my fury sometimes. My parents installed a heavy bag in my bedroom for me to hit when I feel like I need to. It’s a great release! And it’s pretty sweet that I have a punching bag in my room.

How did I get involved with AboutFace? My parents were actually the first ones to make contact after being referred by the hospital. They wanted me to go to Camp Trailblazers. I met a few of the experienced campers and even went to a few AboutFace events before I decided to go.

This was my first year at camp. I was a little worried about going and was a little apprehensive on my first day. The bus there and back was lot of fun. I was nervous at first to ask kids what was their difference but everybody was really open to sharing and that made it really easy to talk to everyone. I made some good friends and we still text to stay in touch. I’m definitely going back next year. The zip line is mine to own! My mom says she has seen a big change in me since I went to Camp Trailblazers.

With my AboutFace friends I can be as crazy as I really am; they know the real me. I might hold back a little bit with my other friends. I’m already a bit different than them on the outside so I’m not sure they will get my craziness.

I’m into running, reading, and I’m a great tree climber. I may not be fearless but I do like overcoming my fears. I just don’t like it when scary movies mess with my mind and stuff like that.

What else do I like? Manga, Anime, Japanese music, I can’t get enough of it. At school, I like art, drama, music (no surprise there), but I’m not okay with Math. I thought that’s why they invented calculators.

My future? Maybe a make-up artist or even better, a Manga artist. My mom is a teacher so she wants me to get a good education. She’s also told me that perhaps marriage, kids, and buying a house are part of my future plan too. I may toss in a few other items before I follow that plan. Whatever I choose, my difference will never hold me back. AboutFace has been a big help with that.

Vanessa pre-diagnosis
Vanessa pre-diagnosis
Vanessa today
Vanessa today

Links:

Oct 10, 2013

Camp Trailblazers 2013 - A Volunteer's Experience!

Alexandra, Colleen and Louise
Alexandra, Colleen and Louise

From September 14th to 17th I volunteered with Camp Trailblazers Ontario in Haliburton. Camp Trailblazers is a camping retreat for AboutFace youth ages 10 to 18 who have a facial difference. The weekend involved many outdoor fun activities, overcoming physical boundaries, and sharing personal thoughts and feelings.

This year Trailblazers took place at Camp Medeba, located in West Guilford of Haliburton County. I was very impressed with the camp facilities. The cabins had a propane fireplace, the washrooms and showers were well kept (warm water might I add!), and the dining hall was always stocked up on fresh fruit and hot chocolate. The latter was a favourite for all the campers!

Bright and early on Saturday morning the yellow school bus picked up the campers at three different locations in the GTA. The bus ride to camp was full of happy chatter: campers catching up since they last saw each other, sharing stories from the first week back at school, and guessing what would be for lunch at camp! We arrived at camp shortly after 1pm, the sun was shining and the kids were ready to have fun.

We started off our first day with “get to know you games.” Although many youth were returning campers, we had some anxious new faces and volunteers (including myself!), so these games were great ice-breakers. In between lunch and dinner we spent time outside playing chuck the chicken, name games, and ninja slap. Saturday evening was a little bit chilly so we spent some time around the campfire warming up and singing classic camp songs. Alas it was time for bed! I was assigned to co-lead a group of 9 lovely ladies in our cabin. Amanda, a previous Trailblazers camper, and Louise were the other fantastic leaders in my cabin. Both were returning volunteers so they showed me the ropes!

Sunday morning was packed with fun outdoor activities. After breakfast the campers had the choice of outdoor rock climbing or stacking milk crates. It was amazing to witness the campers overcome their fear of heights and tackle the rock climbing wall! For some campers, just putting on the harness and helmets is a big step when it comes to challenging obstacles. Watching the campers stack the milk crates high was very impressive. Everyone cheered when the crates were knocked over.

After lunch on Sunday was probably the most highly anticipated Camp Medeba activity of the weekend: ziplining! While everyone was excited, there were a few nervous campers. The volunteers did a great job helping the campers relax and ensured their safety. I was also able to try ziplining- it was exhilarating!

Sunday evening we weren’t so lucky with the weather as it cooled down and rained quite a bit. Nonetheless, we didn’t let the rain ruin our fun! Rather than having a campfire outside, the kids made a makeshift campfire and we sang songs in one of the activity lodges.

One of my personal highlights from camp was when the volunteers held a discussion panel for the campers. We first went around in a circle saying our names, why we went to camp, and sharing our facial differences. It amazed me with how much confidence and ease these campers were when sharing their facial difference. The panel, which considered of our awesome volunteers with facial differences, answered questions that were anonymously submitted by the youth. During this activity I could truly see the bravery, positivity, and happiness in all of the campers.

Monday morning involved arts and crafts where we used multi-media art. The campers were extremely creative and self-representing in their artwork. After lunch we participated in another Camp Medeba activity: high ropes! One popular element was the Leap of Faith where you climb up tall poll and jump off a small (and shaky) platform. Of course you’re in a harness, but it was such a challenging experience! Some of the campers tackled this element with ease. For example, one lovely camper stopped and tied her shoes right before taking the leap of faith! Other campers needed a little bit of encouragement, but at the end of the day everyone conquered the high ropes obstacles!

Before dinner campers were able to enjoy some free time. The trampolines usually had a long line up of eager campers. Some campers braved the cold water and did the polar bear swim in the lake!

We capped off Monday night with a talent show where the campers demonstrated their amazing talents (singing, acting out skits, telling jokes, and sweet dance moves). Everyone was fantastic! One particular camper brought tears to my eyes when he wrote and memorized a song about Camp Trailblazers, he sang it to the melody of The Sound of Music.. it was a standing ovation for sure! After the talent show everyone slowly returned to his or her cabins. It was such an eventful few days that everyone fell asleep almost immediately.

Our last morning at camp was bittersweet. While everyone was a little excited to return back to their parents and of course eager to get back to school (just kidding), the goodbyes have started. We packed up after lunch and drove back home. It was so lovely to witness friendships strengthen over the weekend, as well as new friendships blooming. Volunteering at Camp Trailblazers with AboutFace was an amazing, heartwarming experience. I hope to be able to return next year and see some familiar, beautiful faces.

Camp Trailblazers also runs in British Columbia, Manitoba, Nova Scotia and Newfoundland. AboutFace is always looking for volunteers! In addition to Camp Trailblazers, AboutFace runs other programs and services throughout the year. It truly is a life changing experience! 

Camp Trailblazer Volunteer, Alexandra Rabalski

Alexandra and AboutFace campers
Alexandra and AboutFace campers

Links:

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Organization

AboutFace

North York, Ontario, Canada
http://www.aboutface.ca

Project Leader

Anna Pileggi

Executive Director
Toronto, Ontario Canada

Where is this project located?

Map of Help kids with facial differences become leaders