Cork based Mummy, Rebecca Walz, speaks to Irene Halpin Long from "Her voice from the kitchen window" about a rare disorder, Okihiro syndrome and how she embraces her and her son's differences.
Originally from Stuttgart, Rebecca has lived in Ireland for ten years and lives in East Cork with her partner, Nicholas and their four-year-old son Caleb. The child care assistant was diagnosed with Okihiro Syndrome. Caleb has also been diagnosed with the condition.
Okihiro Syndrome may also be referred to as Duane-radial ray syndrome. It is a rare inherited disorder characterised by impaired control of eye movement (the Duane anomaly) and bone abnormalities in the hands and feet (radial ray malformations).
“My symptoms are the non-functioning thumbs. I was born with thumbs but they were attached to the index finger. When I was eighteen months old, the surgeons in Germany removed the thumbs and turned my index fingers into thumbs. I also have different shaped kidneys and I have hip dysplasia which is most likely part of the syndrome.
Doctors don’t really know much about that but I’m in contact with other people in America who have it and some of them have hip dysplasia as well or problems with the end of the spine.”
Growing up with a limb difference affected Rebecca. Now, as an adult, she has a different outlook.
“When I was young, I was very conscious about my hands. I used to hide them. Even though you might not see the amount of fingers, you notice that it looks different. My thumbs don’t look like normal thumbs. They don’t move like normal thumbs. I do things differently so I was very self-conscious about that.
Now, to be honest, I really don’t care anymore. People can think what they want. What bothers me sometimes is, if people do stare and then they just look away. Just say something. It’s no big deal. I think most people with hand or leg differences don’t have a problem. They’d rather you ask, because, why not? We’re all different. We all have something different about us”.
Rebecca has adapted and found her own ways of doing things.
“I try to do everything that other people do even though, I can’t do the fidget spinners. I don’t have enough webbing space for that. I tried it out but it didn’t work. Generally, I try to do most things. I write differently. I use my baby finger and middle finger for pincer grasp”.
“I adapt and most of the time, I feel I just have to practise it. I don’t like saying I can’t do it. I just have to do it a different way. Like, tying up balloons. When I started my work experience as a childcare assistant in Germany, that was one thing I found really hard, tying up balloons, but I needed to do it so I had to practise harder. I can do most things”.
“The hip dysplasia does affect me because it’s quite painful and I probably will need a hip replacement in time but I’m not thinking about that at the moment.”
Because Okihiro Syndrome is so rare, the family do not know of other Irish people with the condition. Via Facebook groups, they stay in contact with two families in Ireland who have children with limb differences. This has been a great support to Rebecca and Nicholas.
“It’s nice, especially when you look for someone, like a surgeon or a doctor. You want some kind of reassurance that there is someone there who can do the surgery fairly well. In Ireland, there seems to be one surgeon at the moment. He operated on Caleb’s hand and he seems to be the main surgeon here so it’s nice to share the information that you have”.
At two years old, Caleb had surgery at Temple Street Hospital on his right hand. Some of Caleb’s symptoms are like Rebecca’s but he also shows symptoms of the Duane anomaly.
“He cannot move his eyes outwards. He has to move his whole head wherever he wants to look. He finds walking stairs very difficult because of the vision. His hands are more affected than mine. His right hand has his radial bone missing, it’s shorter and it curls in and his fingers are stiff and he has no thumb on the right. On the left, he’s like me. They operated on him and made him a thumb out of his index finger.”
Rebecca explained her worries surrounding Caleb’s condition.
“I don’t see him as disabled. I’m not disabled. We’re different but I don’t see it as a disability as such. The health issues that come with it are very worrying.”
“Sometimes I wish someone could tell us that it will be fine but you just don’t know what the future brings. They say he could have autism as well. We are waiting for an assessment. But it’s hard to know, is it caused by the syndrome or not? If someone could tell us that very clearly, that would be nice.”
At four years old, Caleb is not fully aware of his condition. He is like any other pre-school child.
“Caleb doesn’t really notice it as such yet. For him, his dad is the outsider it seems because he’s got five fingers and we have four. He never mentioned it before that he has noticed things like that. Even though he knows. I told him that we have four fingers and that the doctor made him a thumb but he doesn’t seem to care about that.”
“He’s totally into cars. Absolutely obsessed with cars. He is very into teddies at the moment, loves the sand play and the beach and swimming”
Rebecca wants to encourage people to ask about her limb differences and would like to connect with other Irish people in a similar situation.
“People don’t need to be shy about it. Children are sometimes better. They come straight up and ask straight away but I don’t like when parents say “Hush Hush”. That’s more hurtful than saying, “look, what actually is different about you?” There’s nothing wrong but there is a difference.”
“I would like to know if there are any other people around who we could connect with, even if they just have the same symptoms, not just the same syndrome so that Caleb doesn’t grow up all on his own. Because I grew up and I never knew anyone with a hand difference and for him, I’d like If he can grow up and see that “Look, it’s ok”. I wish that for him in the future. That being different is ok.”
Rebecca sums up her message beautifully and succinctly.
“It's not a disability, it’s just a difference.”
(Photograph and Image courtesy of Rebecca Walz)