Health
'Devastating news about my blind granddaughter may unlock decades-old mystery'
Key Points
Smiling as she takes her first steps using a white cane, two-year-old Martha Thompson is the new poster girl for the Guide Dogs’ TV ad campaign. Born with suspected sluggish pupils, the adorable toddler was just three months old when a consultant told her parents he thought she couldn’t see - suspecting she had a rare inherited disorder, LCA, affecting around two babies in every 100,000. Mum Caitlin Thompson, 34, says: “At first, we didn’t realise what was going on.
Smiling as she takes her first steps using a white cane, two-year-old Martha Thompson is the new poster girl for the Guide Dogs’ TV ad campaign. Born with suspected sluggish pupils, the adorable toddler was just three months old when a consultant told her parents he thought she couldn’t see - suspecting she had a rare inherited disorder, LCA, affecting around two babies in every 100,000.
Mum Caitlin Thompson, 34, says: “At first, we didn’t realise what was going on. It was at about three months that we first saw a consultant who told us he didn’t think Martha could see anything. He thought it might be LCA [leber congenital amaurosis.]”
Astonishingly, Martha’s diagnosis provided a possible answer to a lifelong mystery for another family member - her grandma Sandy Bannister, 64, who has also been blind all her life.
Told her sight loss was because of damage to her optic nerves, Sandy now wonders if she may also have LCA and has now vowed to find out. She says: “I have always known that I carried a recessive gene of some sort. Until recently it hasn't been relevant. What difference would it make?”
But Martha’s LCA diagnosis changes everything. She says: “I want to better understand my own eye condition - I do want to know now." Enjoying a special bond with Martha, she continues: “We explore the world together. She helps me see it more brightly.”
But it hasn’t always been easy for the Swansea family. As a tiny baby, Martha cried whenever she left her parents Caitlin and Daniel’s arms for a second. Daniel Thompson, 35, a data scientist, says: "Instead of going to a playgroup, we were having to spend the afternoon in the hospital. There was so much unknown.”
For Sandy, who relies on touch, not being able to hug Martha was very tough. She says: “I see the world through touch. So not to be able to hold Martha was very sad."
Respite came from the Guide Dogs charity, when Martha was three or four months old and mum Caitlin, a cancer services nurse, contacted their children’s services. She discovered the charity’s My Time to Play - a free Guide Dogs programme for children up to the age of four with a vision impairment and their families.
Led by the charity's specialists, the sessions run online and in person, and build early skills through sensory play, songs, movement, crafts and stories. Caitlin says: "We did online sessions at first, then at 10 months we went in-person. Martha started to learn the songs and know where the toys were that she liked. She loved the messy and sensory play.
"The change was miraculous. She developed, started crawling, standing, toddling off. She let go of Daniel and I and began to explore the world she had been fearful of up until this point.”
And when Martha took her first steps, Caitlin could have burst with pride. She says: “When we first started, she used to sit on my lap or near me and keep checking I was there, touching my hand.
"But this time she just disappeared off to find a horse toy she wanted. To see that independence was incredible - I was so proud of her.”
With the support of her grandma, her parents and Guide Dogs, Martha is now blossoming into a confident little girl. Sandy says: “She inspires me every day. Our bond is so special - even more so because we know how each other sees the world.
“We read braille books together and she loves stickers. I give her the stickers, she sticks them on the paper. They’re probably the wrong way up, but she doesn’t care."
Sandy, who has had a guide dog since she was 22, adds: "You want everything to be straightforward for your children and grandchildren, and of course that's not within my gift. I was very shocked when we realised that Martha was not going to be able to see, because it was just something we hadn't thought about. But she has me to show her that she can live a full, happy life. And that makes me incredibly proud.”
The family agrees there will still be challenges ahead. Caitlin says: "The next big one will be school. She can start going to the nursery part of school from next April. It is a bit daunting."
But Sandy will be there every step of the way, saying: "One of the biggest limitations that anybody with a disability faces is public expectations. You want to make sure they've got a strong sense of self-worth. Martha can do and be anything she wants.”
While Martha responds to light, she does not have any actual vision. Caitlin continues: “We describe everything. If your child can't see, just talk about life. Then, when they're two years old, they will talk to you constantly. Martha talks all the time, to me and to Daniel. You can hear her in bed, singing and talking to herself.”
So it’s no surprise that Martha likes to have the last word. Sandy says: "She's very confident going around our garden. I'll ask her, Martha, would you like me to hold your hand to go up the steps? She'll say ‘no Grandma. Independent.”
*Guide Dogs’ new TV advert celebrates the life-changing firsts people with sight loss achieve every day with the charity’s support. For more info, visit: www.guidedogs.org.uk