“The stares are something you never get used to,” says Cameron’s mom, Jennifer. “Having a facial difference means whenever we go out people stare at Cameron out of curiosity. He looks different than the average child so we spend a lot of time dealing with that, especially trying to help our younger son Callum understand. It’s difficult and you never get used to it but we always try to be super friendly and open if people want to ask questions.”
Cameron was born with extra pieces on his 9th chromosome. He is non-verbal and has severe spine curvature, hip dysplasia, low vision and facial difference. He has undergone a number of hospitalizations and surgeries. For mobility Cameron uses a wheelchair and walker for mobility and a tablet for communication. His condition, know as Mosaid Trisomy 9, is extremely rare with only 200 other known cases worldwide.
The first years of Cameron’s life were extremely difficult. “We had no medical support in our community. We were treated at a large children’s medical centre where we received Cameron’s diagnosis. From there we connected online to an international social media group and were able to determine how rare his condition was with only 200 other known cases.”
Jennifer and her husband Stuart persevered in finding supports and services for Cameron including Easter Seals. “The car seat and stair lift Easter Seals helped fund were huge for us, says Jennifer. “The specialized car seat was fitted to accommodate Cameron’s body, so now Cameron can enjoy car rides comfortably, which he loves.”
“After his surgery Cameron needed to be carried but at 75 lbs. he was getting too heavy for us to lift. Now that we have the stair lift, we help him onto it and he uses the leaver to move himself up. It’s been a life-changer.”
In addition to equipment funding, Jennifer discovered Easter Seals Family Camp. “I can’t express enough how much we enjoy Family Camp. Cameron is so happy there. He is very social so he loves being around the other kids and counsellors as well as all the activity. For Cameron camp has carried through to his daily life. He remembers all the camp stories and songs and has connected to them on a deeper level. We go through the songs and stories at bedtime, and they really help to sooth and relax him. They let him fall asleep happy.”
Family Camp also offers a place where families can just relax. “There are no stares a camp. We love meeting other parents and sharing information. It’s like a feel of ‘home’ – all our worries fade away and we can completely unwind and be ourselves.”