Friedreich’s Ataxia is a rare disorder. It is estimated that about 140 people in Ireland have Friedreich’s Ataxia.
What is Ataxia? ‘Ataxia’ means lack of order or clumsiness.
Sometimes Sam stumbles and falls. He finds running difficult.
Who is Friedreich? Nicholaus Friedreich is the German doctor who first described the condition in the 1860s.
How does Friedreich’s Ataxia affect Sam? • Sam finds writing very difficult. He is learning to touch type to help with this problem. • Sam gets tired quicker than other children. He needs to take breaks more often. • Sometimes Sam gets pains in his legs and feet. They can be so sore that he needs to take Calpol or Neurofen.
What Friedreich’s Ataxia is not: • It does not damage your brain. Sam is smart and will stay that way. He has to pay attention in class and do his work. • You cannot catch it. Friedreich’s Ataxia is an inherited condition. That means that Sam’s Mum and Dad are both carriers for this condition.
What does Sam have to do? • He has is spine x-rayed to see if it is straight. Many children with this condition get scoliosis (that means that your spine curves). • Sam sees a neurologist once or twice a year. He checks Sam to see if there is any change in his condition. • Sam goes to physiotherapy regularly.
Sam sees a foot specialist (an orthotist). She puts custom made insoles into his shoes/runners. These help to keep his feet in the right position. Sam has his heart checked every year. He can ‘see’ his heart on the screen when the ultra-sound test is done! What else?
Sam has to have blood tests done every 6 months. Sam is not too keen on this but he gets to go for lunch in his favourite restaurant when the tests are done! Sam has to take Vitamins every day. Sam has to have the Flu Shot every Winter. What else?
Things you might notice in school • Sometimes Sam misses school because he has to go to doctors appointments. • Sam needs more time to do some tasks. • Sometimes Sam needs help to get things done. • Sam can’t walk long distances, • Sam stumbles, falls and bumps into things.
Is there a cure? Scientists and researchers are working very hard to find a cure for Friedreich’s Ataxia. It takes a long time and a lot of money to find cures for illnesses.
What can you do? • Be a good friend. • If others are mean to him, tell them about his condition and why they should stop what they are doing. • Offer to help him if he seems to need help. • Be patient and remember that if he bumps into you that it’s not on purpose.
Cool things Sam likes to do: • PS3, computer games • Eat pizza • The colour red • Sleep-overs with his best friends • Reading • Going on holidays • Going to movies
A special trust has been set up for Sam. Money has been given to Sam’s parents to help them to pay for medicine and treatment that Sam needs or might need in the future. Trustees make sure that the money is safe and spent wisely. A special trust…
Fundraising events Sam has been part of fundraising events that raise money for his trust and for the people doing research to find a cure for Friedreich’s Ataxia. Robbie Haugh, Kickboxing World Champion fought 100 boxers to raise money for Sam. (Sam fought him in the 100th fight and won!)
King of Greystones… The King of Greystones Triathlon raised money for Sam More than 300 people did a swim, cycle and run for Sam!