The Kerryman (South Kerry Edition)
Living with Albinism
AFTER A NEW VIDEO RELEASED BY NCBI HIGHLIGHTED HER CONDITION, EIGHT-YEAR-OLD KATIE WALSH FROM KIELDUFF TALKS TO FERGUS DENNEHY ABOUT HER LIFE LIVING WITH ALBINISM
ALBINISM is a condition many of us will know little about. Unless we know of someone who has it personally, it’s likely we’ll know little of what it is like to live with the condition.
One person, though, who has intimate knowledge of what daily life consists of with the rare condition is eight-year-old Katie Walsh from Kielduff.
Katie – a very bright and confident young girl – was recently featured in a new video released by the National Council for the Blind Ireland (NCBI) documenting her life and her condition; and so this past week, she and her mother, Helen, chatted to us here in
The Kerryman to try and raise more awareness of the very rare condition.
First off, for those who might not know too much about what Albinism is, here is a very quick rundown of the condition:
It is defined as a rare group of inherited disorders where there is little or no production of the pigment melanin.
This then results in the person with the condition usually having a number of different symptoms, which can affect everything from hair and skin colour to their vision.
There is not a ‘one size fits all’ definition of the condition, with Albinism coming in many different forms and affecting many people in different ways – sometimes quite severely.
For Katie – who has one brother and one sister, neither of whom have the condition–a second-class pupil in O’Brennan National School in Kielduff, it is her eyes and her skin which are most affected by having the condition.
“It affects a lot of things in my life. One of the biggest things is the glasses. I have to wear two types of glasses: I have an inside pair and an outdoor pair, and when it comes to times where it is very bright, then I might have to wear the outdoor glasses when inside. I am never, ever allowed to wear the inside glasses when I am outside,” she said last Thursday.
“The reason that I have the two pairs of glasses is that I need a lighter shade of glasses for the inside glasses. The outside glasses are very, very dark,” she laughed.
With regards to her skin, Katie and her mom, Helen, have to ensure that she is protected from the sun at all times, which means putting on sun screen is a necessary daily activity.
“It affects my skin. I have to put on suncream every day because if I get burnt, it can last a very long time. I get burnt very quickly, and it can turn very dark red very quickly, so I have to wear Factor 50 all the time,” she said.
Even in school, Katie’s life is quite different to that of the rest of her classmates; as she gets older and moves up in classes, the text in her school books has gotten smaller, and so this means that Katie has had to be supplied with large print books.
This also means that – while for one child their maths or English book is just that, one book, for Katie – even the skinniest of books can be split into multiple big volumes.
“One page in another kid’s book can be five pages for me in my books because the words are so big. This year was the first year that I got the big books. I only got two subjects in big books this year, but next year they are talking about me getting big books for all my subjects.
“I have to keep all the books on the window because I can’t keep them in my basket on my desk because if, I keep all the books in my basket, I wouldn’t have any room at all!” she said.
One of the many people who has been there for Katie through her life is her mom, Helen, and she spoke to us about Katie’s diagnosis when she was a baby, as well as about the litany of small things that Katie and the rest of her support network have to be very mindful of on a day-to-day basis.
“At the beginning, when she was diagnosed, it was difficult to get into the system, but once we did get in, the NCBI were a great help. She goes to Temple Street once a year, and then she would have regular visits in hospitals in Tralee and Cork in between the annual visits, then,” said Helen.
“It’s not even just sunny days which affect her. The way that they sometimes explain it is that, say if you’re driving along and there is a row of trees, and say the sun would be flashing in and out between the trees as you’re driving, that’s kind of like what she would see all the time,” Helen continued.
“That gives you an idea of what it’s like for her, that light always flashing in. Hence why she wears the sunglasses then, because this means that it’s not as bright for her. The outside glasses then would have a darker tint than the inside glasses. If she was in school now for this time of year, though, she would normally have to wear the outside glasses inside in the classroom because you have much more of a glare coming in the windows,” said Helen.
While thankfully Helen says that Katie’s condition is quite manageable for the most part, it’s the environment rather than the condition itself which poses the biggest problems for her daughter.
“With stairs, say, if you are in town with her and walking down a set of stairs, I would just hold her hand and just say ‘step, step, step’ so she knows. Some places are very good where they will have the curb painted yellow on the outside so she will know where the step from the curb to car park is, whereas most places won’t have things like that, which makes it a bit harder for her.
“Next year, she will have to have all of her books in large print, and for other kids, they might have 10 books, but for Katie, that is 30 books in reality, and so that creates a practical problem that: one) she’s not going to be able to carry all these with her or keep them all on her desk, and two) there’s the added risk of obstacles being in her way as she tries to get to her books in another part of the room,” said Helen.
On the flip side of this, both Katie and mom Helen say that all the teachers - especially Mary O’Shea, the visiting teacher from the Dept of Education who helps with kids with visual impairment - and staff at O’Brennan NS have been fantastic in helping her get the most out of her school days – and this even includes Katie being allowed to take short 15-minute breaks from the classes during the day if her eyes begin to hurt and strain from focusing on the board for too long.
“Really, it’s the little things that are more of a problem really than the big things,” Helen said.
“She might be able to see something that you think that she couldn’t see, and yet she might fall over something small by her feet that she wouldn’t have known was there. If the light comes in at the wrong direction, it can just cause her that brief second where she doesn’t see properly and then next thing, she is on the ground,” Helen continued.
With Katie being quite the avid reader, Helen said that her daughter sometimes runs into issues where, if she is reading a book where the font is just a little small but manageable, she will continue on – but this can quite often lead to eye strain and her having migraines for a few days afterwards.
Finally, both Katie and Helen wish to thank Laura Cummins and the rest of the NCBI for all of the help and support that they have given to Katie and the family over the years.
Helen also hopes that even if just one person went away from this article about Katie feeling even a little bit more informed on what Albinism is and what it is like to live with the condition, then it will have been all worth it.
With stairs, say, if you are in town with her and walking down a set of stairs, I hold her hand and say ‘step, step, step’ so she knows. Some places are very good where they will have the curb painted yellow on the outside... she will know where the step is
Really, it’s the little things that are more of a problem really than the big things. If the light comes in at the wrong direction, it can just cause her that brief second where she doesn’t see properly, and then the next thing, she is on the ground.