Margot's story
At one year old, Margot is one of the youngest children we support. She was born with a rare condition meaning her eyes and optic nerves never developed. Worried about her future, her parents reached out to Guide Dogs for help when she was just nine weeks old. Now with the support of Habilitation Specialists and weekly sessions, Margot has blown all the family’s expectations out of the water and they feel confident knowing we're here to support her and them every step of the way.
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We went from a desperate situation filled with anxiety and uncertainty, to a situation where we feel equipped through Guide Dogs and Kate (Senior Habilitation Specialist) with the skills and tools that we need to help Margot flourish.
Laura says, “The pregnancy with Margot itself was fairly straight forward, but she was actually born at home because the labour came on so quickly. And because there was all sorts going on, I hadn’t had a proper look at her for maybe three or four hours. It was about two or three o’clock in the morning when I was holding her that I realised something didn’t feel right. Margot hadn’t opened her eyes and her face looked unusual to me.”
Laura asked a midwife to come and look at Margot, but she said some babies don’t open their eyes straight away. But Laura knew there was something wrong with Margot, so we asked for a specialist to see her.
Margot’s diagnosis
Four days later Margot had an appointment with an ophthalmologist. John says “We went to see the specialist eye doctor who performed an ultrasound scan over Margot's eyelids. He just said ''I’m really sorry but I can’t see any eyes.'' ”
“The first couple of weeks of finding out that Margot couldn't see were really difficult because you have a whole plan for your kids before they're even born. You're thinking about what colour wallpaper is going up in their room. It sounds silly, but we'd bought blackout curtains because we didn't want the sun to be waking her up. And all those little things kind of go out the window and they're just not a thing anymore.” added John, Margot’s dad.
Margot was diagnosed with bilateral anophthalmia, which is when a baby is born without both of their eyes. “The ophthalmologist told us he had worked as a consultant for more than 40 years and this was the first case he had ever seen,” says Laura.
“Margot has always and will always be Margot, what had changed was what we thought her life was going to be like. So that was the adaption for us, adapting not to Margot, but adapting our perception of what life for Margot would be like.”
Reaching out to Guide Dogs
When Margot was nine weeks old, Laura and John reached out to Guide Dogs for support. They didn’t know anything about the charity’s services for children. “After Margot received her diagnosis, everything was very medical, but here in our home life John and I needed support as parents. We were acutely aware that Margot needed additional support. I thought that Guide Dogs was simply about guide dogs, I didn’t realise how much the charity does,” Laura says.
“John made a referral and a few days later we received a telephone call from Kate, a Senior Habilitation Specialist. Then a week later she came straight out, she knocked on the door with her big smile, and she sat down at the kitchen table, had a cup of tea and said, ‘it's going to be okay. Margot is going to be okay’.”
John adds, “Straight away Kate said she’d be coming every week. And just knowing someone was going to be coming and checking on Margot to see how she was progressing was a massive weight off.”
Weekly habilitation sessions
Habilitation Specialists like Kate work with children aged 0-25 years old, helping them build the skills they need to live independently in the future. Margot is one of the youngest children Kate has ever worked with, but early intervention is key.
Laura says “Margot will instantly recognise Kate. She knows her voice and her smell and Margot’s smile and body language will tell you she knows Kate is here and that means she is going to play, but also do a little bit of work that morning.”
Kate has done things with Margot that we would never have known to do and would never have thought of doing. It means that for Margot, her development has come on far more than if we didn't have the support of Guide Dogs and if we didn't have Kate visiting her on a weekly basis.
Kate, a Senior Habilitation Specialist adds “Margot is really keen to learn and anything you give her she takes in her stride. She’s been working with me on early movement skills so knowing your hand is your hand, your foot is your foot. Those skills are really important because if you know what your foot is you can stand on it.”
“We’ve started exploring textures and different surfaces. And she will often have a snack so I help Laura and John in how to support Margot in feeding herself.”
Now Margot has started nursery, Kate’s weekly sessions are continuing at home, and every other week in nursery to help make sure staff can continue to help Margot develop these skills.
The future
“Margot is doing things today that I thought she would never even be able to do in her whole life. The fact that she can already do them at aged one is massive,” says John, Margot’s dad.
Laura adds, “Knowing that the support from Guide Dogs for Margot is there right from her being nine weeks old though to adulthood is a huge relief. It gives us a sense of security that there will be somebody there for whenever we need them. I think that Guide Dogs are unique in that sense, their support remains there until a stage when Margot will hopefully be living independently.”
“I would say to any parent who finds themselves in a situation where maybe they are receiving a diagnosis, and maybe they feel similar feelings to what John and I felt - of grief and desperation - please don't worry because things actually will be okay. And life for Margot looks very different to what we ever anticipated it was going to be. But it isn't any less of a life. It's still a beautiful life which is very joyous and very happy.”
John adds “We can never really thank Guide Dogs enough for what they’ve done for us. There isn’t enough money in the world to replace all the teaching Kate has given us and Margot.”