Caleb Forbes might seem a little standoffish when you meet him.In public, he's quieter than most eight-year-olds.He doesn't have many friends. At social gatherings, he's usually off on his own.He's not shy. He has 22q Deletion Syndrome, a rare genetic disorder with up to 180 symptoms — from heart defects to facial deformities to learning challenges. People with it have a small piece of chromosome 22 missing.Caleb is one of the fortunate ones.“The biggest roadblock is that people look and see a typical child — his issues are something you can't see,” said his mother Laura-Jane Forbes. “There's not as many health issues and learning difficulties as others [with 22q Deletion] but he suffers from anxiety. He gets overwhelmed when he's frustrated with social or emotional issues. He's the kid who stands off to one side at a party with his thumb in his mouth.“He is good with family and people he's comfortable with, he just doesn't feel confident jumping into a new social situation. I am proactive. I am a pusher. When do you back off? When do you say to a child, 'Just suck it up and do it?'”She spoke with The Royal Gazette in hopes of bringing awareness about 22q Deletion to the Island — and finding others here who might have it.“The main problem is nobody knows about it. I would like to educate and build awareness about 22q in Bermuda,” said Ms Forbes, who is raising Caleb and his younger brother Noah on her own. “I have started a Facebook page called 22q and You Bermuda as well as twitter and instagram (22qnyoubermuda). I would like to find other families living with this syndrome or any other chromosome disorder and form a support group for the parents as well as a playgroup for the children so that they can see that they are not alone. I truly feel that once the stigma is lifted on people living with 'differences' the less ashamed these children and adults with these differences will feel which will open them up to so many more experiences.”Caleb was diagnosed shortly after he was born. Paediatrician Ryan Bates determined a heart murmur when he was three days old. At six weeks, Caleb was flown to Children's Hospital in Philadelphia for treatment.It was discovered he had two holes in his heart and a ventricular septal defect. The doctors found he had 22q Deletion after his blood work was run in anticipation of the necessary surgery.“We were told he had it but because he didn't have any 'issues' after that, it was put in the back of my mind and along we went about life,” said Ms Forbes.“Caleb has always been 'shy' around new people or 'cautious' in new situations and he has never really liked school. But in the middle to end of P2 he started to have more challenges with the math and comprehension. In P3 he had an even more difficult time. At this time I contacted my insurance provider and also the Children's Hospital in Philadelphia to get Caleb back out there to be seen.”They returned to the hospital in July, where Caleb was seen by a range of specialists.Ms Forbes, her sister, parents and ex-husband were tested for 22q as it can be hereditary. None of them had it.Children with 22q Deletion can have a range of problems. Among them: cleft palates, heart defects, learning challenges and eating issues. Caleb is regularly tested to ensure his thyroid is functioning properly, his calcium levels are where they should be and his platelet counts are appropriate.Staff at Gilbert Institute, where he's a student, are aware of his condition.“With 22q there can be up to 180 symptoms or side effects that come with this chromosome deletion. Caleb has been blessed with a few of them but he's not as extreme as some children are, thank God. He has learning challenges in school with math as far as sequencing, patterns and problem solving. He is an excellent speller and reads very well but he has trouble answering comprehension questions about stories especially when it involves abstract thinking. He has some speech issues from his high palette.“Caleb's school has been great. They're being very helpful and supportive of Caleb and I am currently trying to set up a little seminar for them with [his paediatrician] Dr [Richard] Fulton to give them all more information about 22q. I have also looked into getting him seen by a child psychiatrist to help with the anxiety and emotional challenges.”Her son also has to cope with problems with his peers, Ms Forbes said.“He has been teased by adults as well as children and has also been bullied in school. He doesn't get invited to parties that his classmates have and gets very sad about being 'different'. He doesn't want to be different. His emotions get the better of him sometimes and he doesn't always know how to deal with his anger or his sadness and he can act out by throwing things or he'll run away from the situation to cry.“There are still instances at home [even with] his brother and his cousin where he removes himself. He's more introverted, he's more standoffish.”Ms Forbes wrote to family and friends on her Facebook page last week:“We have been blessed that since his surgery Caleb hasn't suffered with illness or any other medical issues but he has had some academic challenges in school. We travelled to Philly this summer and had some assessments completed in order to get him the help he needs in Bermuda. It is difficult here because hardly anyone has heard of 22q and so I am fighting for things I don't even know to fight for, but we are getting on track and we will accomplish great things.“Caleb is a funny guy who enjoys making up games with his brother and hanging with his cousins. He LOVES to swim and watch movies and dance to Soca. We have Soca dance parties in the kitchen all the time! I love him to pieces and I am truly blessed to have him in my life, I wouldn't change anything because he's perfect the way he is!”