Irish mum who is going blind wants to take her little daughter to Disney before losing her sight
An Irish mother who is going blind is keen to make special memories with her seven-year-old daughter before she completely loses her sight.
Carol Brill (45) lives with Usher Syndrome, a rare genetic disorder which means she suffers from severe hearing loss and “will be lucky” to still have her sight next year.
The Dundrum woman’s sight is deteriorating each day and she wants to make the most of the time she can still see her beautiful daughter Sara (7).
“My vision is less that 5°. The average person’s is 180°. That means my realm of vision is smaller than the size of a keyhole, although the vision I do have is quite clear but restricted.
“Right now I want to give Sara memories that we won’t be able to make down the road,” said Carol.
A campaign has recently been launched to raise funds for a trip to Disney World in Florida, which Carol and Sara will hopefully make on her 8th birthday in July.
“The bottom line is I’ll be lucky if I see Sara make her Holy Communion next year so I’m trying to capture every precious memory I have.
“I’m trying to store her smiles and make colourful memories which I hope will get me through the dark days,” said Carol.
“Sara is a huge fan of Frozen and in particular Elsa so it would be a dream to be able to make this trip together while I still have my sight.”
While in the US, Carol will participate in the second stage of a research trial at the National Eye Institute in Maryland.
The campaigner for Fighting Blindness and the Ann Sullivan Foundation was misdiagnosed when she was 10 with RP (Retinitis pigmentosa) but an Usher Syndrome diagnosis came when she was 21.
“I was diagnosed with RP (Retinitis pigmentosa) when I was ten. It wasn’t until I was 21 and I began to look into it a little bit more that I was diagnosed instead with Usher Syndrome.
“It has no treatment or cure. I suffer from Type 2 which means I have moderate to severe hearing loss and have had sight loss from my early teenage years.”
Although Carol’s parents had a clear picture of her disorder from the age of ten, they chose not to tell her until she was much older.
Despite respecting their decision, Carol feels the best policy is honesty when it comes to Sara.
“My parents decided not to tell me about my diagnosis until I was older.
“Now, I completely understand and respect their decision. It was a very scary diagnosis and there wasn’t a lot of information available to them.
“They didn’t have the internet and it must have been a very hard thing to live with.
“From a young age I’ve always been honest with Sara. When she was younger she used to push the hearing aids into my ears first thing in the morning so I would be able to hear her. She’s has a good understanding of Usher Syndrome but she is only seven,” said Carol.
“She is so helpful. I’d be completely lost without her. I’m blessed.”
Carol believes that Twitter has been such an important tool for creating awareness and making connections with people who are interested in supporting organisations that focus on helping blind and deaf people in Ireland.
“I joined Twitter to develop a business idea but I’ve found it to be a huge support to me. I’ve made some lovely friends and also Twitter is a great tool to promote the work that I do for organisations like Fighting Blindness and the Ann Sullivan Foundation,” she said.
The mum and daughter recently spent a magical Spring day at Zwartbles Sheep Farm, which Carol says was one she will always remember.
“Through Twitter I met Suzanna Crampton who runs Zwartbles Sheep farm in Bennetsbridge.
“She invited Sara and I up for a day and last week and we had the most wonderful time. There were fields of daffodils and lovely little lambs. It was very special,” she said.
Carol recently was fitted with state of the art hearing aids which have enhanced her hearing, enabling her to hear passing cars.
“I’ve had a new hearing aid fitted recently which has helped my hearing tremendously. The other day a Dublin Bus Tour passed and I could hear the guide. I’ve not yet discovered if I can hear conversations I shouldn’t be listening to,” she joked.
“When you’re sight is deteriorating you need to be able to at least rely on your hearing.
“It’s a fantastic feeling.”
To support Carol's campaign and for more information visit: www.seeingdisney.com
Or visit them on Facebook: facebook.com/SeeingDisney