Irish mum with rare genetic disorder makes 'magical' trip to Disneyland with young daughter (8) before losing sight
Published 05/11/2015 | 15:40
A Dublin woman and her young daughter took a dream holiday to Orlando thanks to kind donations made to their campaign.
Carol Brill (45) hoped to visit Disney World with her young daughter Sara (8) before she lost her sight to Usher Syndrome, a rare genetic disorder which causes severe hearing loss and sight deterioration.
The Dundrum mum, who said she “will be lucky” to still have her sight next May, spent five and a half weeks in the US last summer with Sara which she said was unforgettable.
“It was such a wonderful trip. It was a dream come true really,” said Carol.
“Of course there were many challenging moments visually... trying to find your child in the crowds at Disney is difficult anyway but when your vision is impaired it’s even more difficult.
“But Sara enjoyed it so much the experience was priceless to me,” she said.
The Fighting Blindness campaigner celebrated Sara’s eighth birthday in Disney and recalled a particular moment which she will hold precious.
“Sara and I were in Disney’s Epcot on the evening of her eighth birthday and there was this moment that was truly unforgettable. Sara was dressed up in her Elsa gown and I just watched her at the edge of the water, dancing.
“She was away in her own little world except for the classical music playing and it gave me goosepimples,” said Carol.
While in the US, Carol took part in the second stage of a research study into Usher Syndrome at the National Eye Institute in Maryland and gave a speech at the Foundation Fighting Blindness Visions Conference in Baltimore. The mum and daughter also travelled to New York and Niagra during their trip.
The family is now back in Ireland and while Sara is dealing with the tribulations that come with second class, her mum is campaigning to have Deafblindness recognised as a unique disability.
“The way I would explain it is that deafness comes with its own challenges and is recognised as a unique disability. Blindness comes with its own challenges and is recognised as a unique disability. Deafblindness is not recognised but offers completely different sets of challenges.”
"In my case, I'm not only coping with the devastation dual sensory loss is bringing to my life and family, but I am also coping with my own health care. There isn't a Pathway to Care as so I'm relying on my own initiative to seek help and advice for the Deaf and for the Blind because there is not a dedicated professional to co-ordinate the services," said Carol.
Carol has written to Minister for Health Leo Varadkar about her campaign ‘I’m Not Invisible’ to which she has not received a direct response.
Because Deafblindness is not recognised as a unique disability, Carol has to manage her own health care and privately pay for hearing aids to meet her audiological needs.
There are more than 10,000 people in Ireland who are both Deaf and Blind and Carol is determined to continue to fight for them to be recognised under Irish law.
I’m very committed to this campaign for personal reasons and for others living with deaflindness.
“Through the campaign we hope to continue to communicate with the Department of Health and hopefully, the Minister will grant such recognition during this current government,” said Carol.
For more information on Carol's campaign visit: www.facebook.com/ImNotInvisibleCampaign