By Ursula Duddy
A Derry mother who has two young children with albinism has said ‘it has opened my eyes for the better about people who are different’.
Kathleen, 35, and Peter Simms, 41, are parents to Maggie, aged five, and Peter, aged two, who were both diagnosed with albinism.
The couple spoke of their experiences to raise awareness about the condition as part of the recent International Albinism Awareness Day.
Albinism is a rare genetic condition that causes very poor sight and white hair and pale skin due to a lack of pigment.
After Maggie’s birth, Kathleen had negative experiences including comments from a healthcare professional telling her she would have to ‘change the plans’ she had made for Maggie and adults staring when she took her out in public.
Kathleen and Peter then vowed to educate people to end the stigma around albinism so that people would treat her children as individuals and not victims and also dispel myths around the condition.
“We would like the world to know that people with albinism do not have red eyes and that people with the condition lead normal lives,” said Kathleen.
“We would also would like to educate people on the condition and how it affects people.”
Kathleen said she noticed that when Maggie was born ‘her hair and eyelashes were snow white’. Having grown up with a boy who had albinism, Kathleen recognised the condition. When she asked a doctor to check her, she was dismissed as being ‘silly’.
However, a midwife took her seriously and it was later confirmed. Peter was then born three years later with the same condition.
Early life was difficult living in a darkened house because of light sensitivity but the most difficult thing was people staring when the couple would take their children out.
However, Kathleen joked that the upside to the situation was the children didn’t see the stares due to their poor eyesight and that they even have a bit of fun with it and get the children to wave to those who stare, causing them a well-deserved red face.
Kathleen and Peter said they received great support from the Royal National Institute of Blind People (RNIB) and the charity Angel Eyes and the children have thrived.
Kathleen said: “Maggie is a Primary Year One pupil at Saint John’s primary school in Derry and is a very confident and clever child who is very creative and loves ballet dancing.
“Peter is also very clever but much more of an introvert. He loves cars and hoovers and attends the community crèche.”
Kathleen said that Maggie is aware she has albinism and they work every day to helping her and her little brother embrace their condition.
“Maggie is aware of it now because we have been talking about if from she was a baby and she is five now, so she understands,” she said.
“She does get frustrated when sometimes her wee friends run away from her but we reinforce everything with her and tell her, ‘You are who you are’ and we help her to understand she has to live with it. Being different is not a bad thing now, it’s trendy to be different!
“We just teach them to be happy about who they are.”
When asked what reassuring words she would give to parents whose children had just been diagnosed with albinism, Kathleen’s message was an honest but positive one.
“It’s not the worst thing in the world,” she smiled.
“At first you are shocked, because it’s not a normal thing but they just surprise you every day.
“At the start, it is devastating because you just don’t know what to expect and you know they are going to have all these problems all their lives, you just think, ‘Oh, what am I going to do’.
“But they just bring you so much joy. It’s opened my eyes for the better about people who are different.”
Kathleen said: “Life’s not easy and they may have to learn it the hard way but there is no point in hiding away. We want to give them the tools to go out into the world and embrace who they are.”
The Albinism Fellowship provides information and support for people with albinism and their families. More information at: www.albinism.org.uk
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