Sarah needs Cork's help
“We just want her home to be safe so she can be a little girl and play in her garden."
The Cork family of a 6 year old girl with a rare genetic disease that affects her eyesight are raising money to make her home a safer place for her.
Sarah Connery, whose family is from Belgooly was diagnosed with Wagner’s syndrome earlier this year, an extremely rare and cancerous condition that causes progressive vision loss.
She had initially been diagnosed with uveitis, which is an inflammation of the eye, but after more than 2 years of constant tests, doctors confirmed she had Wagner’s syndrome in February.
To help prevent cancer from developing, Sarah must now receive a low dose of chemotherapy every month, as well as a weekly chemotherapy infusion, on top of daily medication.
She is due to have an operation next month in Great Ormond Street Children’s Hospital, London, which is hoped will slightly improve her eyesight, however it is not guaranteed.
Tragically, her parents Patrick and Sarah lost their 4 year old son Joseph 5 years ago to another rare genetic disease.
Little Sarah’s grandaunt Catherine O’Brien and godmother Aishling Murphy recently set up a GoFundMe page so that her home can be upgraded in line with her needs. The home needs increased lighting, particularly around the stairs. The garden also needs to be sheltered as Sarah’s many medications mean she cannot be in direct sunlight, as it affects her eyes, and she is at high risk of sunstroke.
The fundraising target is set at €8,000. Catherine said her “loving and happy” grandniece has been incredibly strong over the past few years and that her family gets its strength from her.
“It’s very hard to see here going through it. She took her first steps here in my hall, she's a very special girl to us.”
“She has this bubbly personality and everyone that meets her, they just fall in love with her, she has this real loving way about her, and she has the biggest smile. She's just an amazing, amazing little girl, even though every month she gets the chemo done, she has weekly injections every Friday, and she's on medication every single day, and she just seems to get on with it.”
With Sarah’s operation just around the corner, Catherine says the best-case scenario is that it will “just give her an extra bit” of eyesight. “It won't be loads because she's already been registered as blind. She's getting her cane in a couple of weeks’ time, so it's still going to be a very hard, long journey for them,” said Catherine.
Catherine is organising a cake sale on 14 May. The sale will start after 8.30am mass at the Carrigaline Pipe Band Hall. To donate, visit gofundme.com and search “A chance for Sarah”.