Ellis and Ralph's story
Ellis was born with oculocutaneous albinism which severely affects his vision. Ellis' sensitivity to light makes it hard for him to play with his friends, especially in the summer, but having a buddy dog has been very positive and makes him feel a lot better.
When Ellis was born, his mum, Sian could see he wasn't the same as her older son, Ioan, had been as a newborn. She says: “I knew as soon as I saw him, not just because of the white hair but because he wouldn't open his eyes.” However, it wasn't until Ellis was three months old when they were referred to the Alder Hey Children's Hospital, that they were given Ellis' diagnosis – oculocutaneous albinism. It means that as well as lacking pigment in his skin and hair, his vision is severely affected, with extreme sensitivity to light (photophobia) and nystagmus, an involuntary movement of the eyes back and forth.
Sian says: “In a way, the diagnosis was quite a relief because from there we were able to join the Albinism Fellowship. I went to a brilliant conference where I met adults with the same condition and other families. It sorted a lot of my concerns about Ellis' future.”
Bright light is very uncomfortable for Ellis, so when Sian took him out in his pram as a baby, she had to keep him covered at all times. He has always had to wear tinted glasses, and they have tinted windows at home to keep the level of light low. Another adjustment they have had to make is to mark the edge of all the steps with yellow tape as Ellis struggles with depth perception. Close up, Ellis can read 36-point text on a tablet but he can't recognise his friends at a distance and is easily disorientated.
From a young age, Sian describes Ellis as “dog mad”, and having read about Guide Dogs' buddy dog service, they decided to apply for one. In 2015, Ellis was matched with Tweedie, a German shepherd. “She was absolutely lovely,” Sian says, “very calm and caring.”
Ellis has good friends, but having Tweedie gave him the confidence to do a talk at his school about her and explain more about his eye condition.
“Ellis and Tweedie were best friends and he felt responsible for her right up to the end – he and Ioan were with me when Tweedie was put to sleep. We were distraught but the boys learnt a lot about resilience from it – that we were all in it together and that you can get over it.”
Part of the healing process has been welcoming a new buddy dog – golden retriever Ralph – into their home. “It's been a very positive experience,” says Sian. “Ellis loves having a dog. They're such fun and the companionship is really important, particularly when he can't always go outside with his friends, especially on bright summer days.
Since applying for a buddy dog, the family have used several other Guide Dogs services for children and young people. Ellis was taught to use a long cane by one of our Habilitation Specialists and learnt the route from home to school, so that he can get there safely and independently. They also applied for an assistive technology grant that has enabled them to buy Ellis a laptop for use at home, which includes magnification and screen-reading software.
They have also attended several family events. These are arranged specifically for children with a vision impairment and their families as a way to take a break and meet others in a similar situation. “They've been brilliant,” says Sian. “We all enjoy going to them. For me, it's really good being able to talk to other parents and exchange information. And Ellis has made friends and been able to see what technology is available. It means he doesn't feel that his vision impairment is a negative thing.”
Sian has met several guide dog owners through the events, who have also helped her to see a positive future for Ellis. She says: “Meeting adults with sight loss who are leading independent professional lives means that even though I know there will be challenges, I feel much more confident.”