BRIAN
Brian is a vibrant 5 year old who loves all things Batman. He is cautious and careful and loves new experiences. Brian loves reading, playing, socializing and being a typical and silly boy. Brian is about to enter kindergarten and has nothing but excitement and joy for entering the big school to meet friends. His cautious self catches up to him every now and again and brings up questions about who will he know, will they like him and who is his teacher. I know he doesn't need to worry. Brian lights up the room, his smile melts hearts and gains him friends quickly. He is no longer shy and reserved. He is aware that when he becomes tired, his speech slurs and he wobbles on his feet. He compensates by sitting, wiping the drips of drool on his supercool wristbands and speaking more slowly. He is only five, but he understands his body and its signals as if he were an adult.
ATAXIA-TELANGIECTASIA
BEYOND THE DIAGNOSIS
Outside of school, Brian loves therapeutic horse riding, karate and playing t-ball. He enjoys the feeling of being part of a team and working together, but he also enjoys the quiet simplicity of riding a horse through a trail. Karate mixes the two, allowing him to be in a group, but working alone. Brian is always asking about the next adventure, he is not a homebody. He is always wanting to book playdates, trips, sleepovers in hotels and just being on the go. By just looking into his crystal blue eyes and watching him run, laugh and be silly...you would never know that AtaxiaTelangiectasia is inside him and will take all of that movement away from him as the disease progresses. These are the best days...the joyful, innocent days where he is A-T free and we carry the burden for him. We will carry it for him as long as we can, so he can enjoy being blissfully unaware. ~Lauren, Brian’s Mom
Ataxia-Telangiectasia is a rare inherited disorder that affects the nervous system, immune system, and other body systems. This disorder is characterized by progressive difficulty with coordinating movements beginning in early childhood, usually before age 5. Affected children typically develop difficulty walking, problems with balance and hand coordination, involuntary jerking movements, muscle twitches, and disturbances in nerve function. The movement problems typically cause people to require wheelchair assistance by adolescence. People with this disorder also have slurred speech and trouble moving their eyes to look side-to-side. Small clusters of enlarged blood vessels called telangiectases, which occur in the eyes and on the surface of the skin, are also characteristic of this condition. People with Ataxia-Telangiectasia often have a weakened immune system, and many develop chronic lung infections. They also have an increased risk of developing cancer, particularly cancer of blood-forming cells and cancer of immune system cells. Affected individuals are very sensitive to the effects of radiation exposure, including medical x-rays. The life expectancy of people with Ataxia-telangiectasia varies greatly, but affected individuals typically live into early adulthood.
Colin Howel is a design engineer by profession and paints for fun. He has been painting in his spare time for
3 years or so now and gravitated very quickly to portraiture which he finds to be an incredibly rewarding way to spend time. Colin’s art qualifications are limited to A level Art History which he studied between the ages of 16-18. This has been supplemented in the last 3 years by the vast amount of practical advice he has received from artists and amateurs alike on social media. He paints predominantly in oil on stretched canvas.