Fundraiser launched for Waterford girl (8) with ‘extremely rare condition’
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8-year-old Olivia has a rare condition called Ogden Syndrome
A fundraiser has been launched for a girl from Waterford who has an “extremely rare condition”.
8-year-old Olivia, whose family describe her as “funny, loveable and bright”, has Ogden Syndrome.
This affects her development and requires constant specialised care. Olivia is a wheelchair user, has bilateral hearing loss and is non-verbal.
When Olivia was three, she was diagnosed with severe scoliosis and underwent her first spinal surgery.
She had a rod placed in her back and every six months, has had to have more surgeries to lengthen the rod.
Olivia is due to have another spinal surgery in the coming months and will continue to need more.
She is supported by her mam Diane, dad Tony and sister Hannah. Diane is a Special Needs Assistant (SNA) in a special school and Tony works in the hospital.
They live in a two-storey house, with Olivia’s parents having to carry her upstairs to her bedroom and the bathroom.
To ensure Olivia's safety, dignity and independence, she needs a safe and accessible bedroom, fully adapted bathroom and a ceiling track hoist to allow her to be safely transferred between the key areas of the home.
Olivia’s family say they have been quoted €120,000 to complete these adaptations, which is beyond what they can afford on their own.
As a result, Olivia’s Godmother, Charlotte O’Brien, has set up a GoFundMe in a bid to raise funds for the adaptations.
Charlotte said: “This is why we are reaching out no matter how big or small a donation it will go directly towards creating this safe and accessible home where Olivia can live in comfort and dignity.
“Your support will ease the physical and emotional strain on her parents and make a real lasting difference in Olivia's life.
“Let's come together to give Olivia the home she truly deserves.”
So far, over €12,000 has been raised, with a goal of €40,000 yet. A link to the GoFundMe page can be found here.