This woman wants to make memories with her daughter before losing her vision and hearing

Every month, Carol Brill’s vision and hearing fade further. The mother of one tells Helen O’Callaghan why her life has become about trying to cram in as much as possible with her 7-year-old daughter.

Carol Brill is going to buy her daughter’s First Communion dress this year even though Sara, 7, won’t make her Communion until 2016.

The 45-year-old mum is taking a gamble that the child will still fit into the dress next year. Carol has Usher Syndrome type 2, a rare genetic disease causing combined sight and hearing loss. There is currently no treatment or cure. Carol has worn a hearing aid since age four and has gradually been going blind since she was 11.

Carol Brill with her daughter Sara

“A normal-sighted person can see 180°. I can see 5°. It’s like tunnel vision, even smaller than what you’d see looking through a keyhole. My sight has taken another dive recently. It will be a miracle if I see Sara making her First Communion.”

Buying the dress ahead and designing the beading for it is a brave, determined bid by the Dublin mother to cheat Usher Syndrome out of robbing her of all precious visual images of her little girl. “My dad’s cousin is making a cloak [for Sara’s First Communion]. It’s open knitting in soft, white wool that has a bit of sparkle. It looks like crochet with scalloped edges. I’m doing it so I’ll have some idea of what Sara will look like on the day.”

Having Usher Syndrome means living with grief every day. “You grieve for the sight you had last week, the sight you had 20 years ago, the things you used to be able to do. Cutting the grass was no bother – now it’s a challenge. It’s why I love daisies – they let me see where I haven’t cut. “I know it doesn’t compare to death. Sara is alive and I’m alive,” says the single mum whose son, Peter, died when he was only four days old.

“But not to be able to see Sara will be heartbreaking,” she says of the little girl with strawberry blonde hair that “goes its own way”, the child with the gorgeous smile and two missing front teeth. “She’s always smiling. She can’t stay cross for long – it just turns into a smile.”

Sara doesn’t know Usher Syndrome is such a horrible disease.

“She just knows I can’t see or hear well. Sometimes she gets upset. In the mornings she knows I don’t have my hearing aid in – she comes straight up to my ear and talks into it. We always hold hands when we go out and she jerks my hand to warn me when someone’s crossing our path. I’ve never asked her to do that. She’s feisty, independent and incredibly caring. Not seeing Sara next year, at her Confirmation, when she’s 18, 21, at her wedding. It’s shattering. I won’t see her growing older. The thought of losing my hearing too and not being able to hear her will really kill me. She’s always laughing, singing. To lose the sight and sound of her is absolutely daunting,” says Carol, who lip-reads.

For her birthdays, Sara gets wishes. “She’s not into big toys. She loves nature.” Her seventh birthday wish was to dip her toes in a lake, for her sixth birthday she went on a horse and carriage drive. “That day she wore a pretty party dress. She was so quiet. She just took in everything. I know she was feeling like a proper princess. You know she’s overwhelmed and enjoying the moment when she doesn’t talk. When a child expresses amazement, it takes your breath away. It’s such a beautiful thing to witness.”

For her eighth birthday in July, Sara’s wish is to wear an Elsa dress. Carol’s wish is that she wears it in Disney in Florida. “It will probably be the last birthday I’ll see, our last sight-seeing tour together. Every second of that day is going to be very precious.” This June, Carol will participate in the second phase of a study into the historical progression of Usher Syndrome run by the National Eye Institute in the US. She will go on to speak at a Foundation Fighting Blindness Visions conference and afterwards travel to New Orleans to attend the Usher Coalition conference. This conference will provide all the latest information on scientific research on Usher Syndrome. Following this conference, Carol plans to bring Sara to Disney. In doing so, she will create a cherished visual memory of her child’s joy. It is to sustain her when sight of Sara is gone. Carol hopes to raise €10,000 to fund the Disney trip, her US travel and accommodation around the conference events and, if possible, to pay for costs associated with getting a guide dog. Her recently-launched website seeingdisney.com features ‘The Seeing Disney Song’. Carol’s friend, Terry Connors wrote it with his niece, Emma Schmid-Looney. You can download the song and make a minimum donation of €1, though there are options to donate more.

What is Usher Syndrome?

Usher syndrome makes reference to group of genetic conditions that have both hearing loss and progressive vision deterioration due to retinitis pigmentosa (RP). The prevalence of Usher syndrome varies from country to country, but it is a rare condition affecting approximately one in 10,000 people. While patients with retinitis pigmentosa do have a greater tendency to develop hearing difficulties as they age, the term Usher syndrome is reserved for patients where the hearing loss becomes obvious at a very early age.

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