An 8-year-old Waterford girl is bravely battling one of the world’s rarest conditions
Olivia from Waterford is funny, charming and bright.
“She’s always happy, always smiling and adored by everyone” her mum Diane says.
Behind her cheerful spirit however is a daily battle with an exceptionally rare condition that impacts only a handful of people worldwide.
In her eight years of life, Olivia has been confronted with health challenges that would test even the strongest of adults, and she has faced them with exceptional bravery and positivity.
When Olivia was just three years old she was diagnosed with Ogden Syndrome.
The impacts of this rare X-linked genetic condition are far-reaching and characterised by a spectrum of clinical features.
The name Ogden syndrome was suggested by the first family identified with the condition in honour of their hometown in Utah, USA. The syndrome was first described in 2011 by Dr. Gholson Lyon, who cared for the family and obtained DNA samples to identify the genetic cause.
As of 2024, it is believed the disorder has been reported in under 100 individuals globally.
Due to this extraordinary rarity, doctors don’t fully understand the syndrome.
For Olivia, the impacts of Ogden Syndrome require 24/7 care.
She is a wheelchair user, non-verbal, PEG fed and suffers from bilateral hearing loss.
She also has severe scoliosis that requires her to attend regular surgeries. When she was just three-years-old, she had a rod placed and has needed surgeries every six to eight months since to have it lengthened.
Despite the many hospital stays, Olivia’s bravery has remained unshaken and her smile has remained with the support of Dad Tony, Mum Diane and big sister Hannah.
“She’s always happy, always smiling, there's rarely any unhappiness in her” Diane told the Waterford News & Star.
“She’s absolutely adored by everybody. She’s a charmer and everyone gravitates towards her because she has a personality that everyone loves. School staff, SNAs, teachers, her big sister, friends; they all have genuine love for her because she really just cheers everyone up.
“Even though she can’t talk she’s really good at communicating. She’s very sociable, loves being out-and-about and loves people."
Diane says the diagnosis Olivia received when she was three has meant that life is not always easy.
“Nobody knows about the condition and as far as I know she’s the only person in the country with it. It’s extremely rare and even doctors don’t know much about it.
"She has severe scoliosis as well. In January 2022 they placed a rod in her side. She was still growing so they couldn’t put it in her spine yet. It has really helped her, but since then she’s had many surgeries to lengthen the rod. The next step is removing the rod in September and putting one in her spine instead.”
Diane added: “When Olivia comes out of those surgeries you wouldn’t even think she’d had any surgery at all because she’s still smiling. Even though they are massive surgeries for her she takes it all in her stride. People are always just amazed of her and we’re all so proud of her. She’s been through a lot in only eight little years."
As Olivia gets older, the need for additional space and facilities in her home has increased.
“She’s getting bigger and we’re getting older” Diane said.
“We live in a two-storey house and we have to carry her up the stairs to her bed, lift her in an out of the bath. It's becoming a risk for us."
To ensure her safety, dignity and independence, a campaign has been started to provide Olivia with a safe and accessible bedroom, fully adapted bathroom, a ceiling-track-hoist to allow her to be safely transferred around the home and a suitable living space where she can be included in family life
A GoFundMe page created by Olivia's godmother Charlotte has raised €13,000 in just a week.
“We’re blown away by the generosity” Diane said.
“It’s crazy the amount of support from family, friends, work colleagues, friends and even complete strangers.
“I’d like to say a massive thank you to everybody, we couldn’t do it without them.”
