An appeal has been launched to help create a safe and accessible home for eight-year-old Olivia, a bright, funny and loving little girl from Waterford whose infectious smile brings happiness to everyone she meets.
Olivia lives with an extremely rare condition called Ogden Syndrome, a genetic disorder that affects her development and means she requires specialist care and support around the clock. Despite facing challenges that most people could never imagine, Olivia continues to show incredible strength and courage every single day.
Olivia is a wheelchair user, is PEG fed, has bilateral hearing loss, severe scoliosis, obstructive sleep apnea and is non-verbal. She requires 24-hour care, but those who know her say her personality shines through and that she is, above all, a beautiful and much-loved little girl.
At just three years old, Olivia was diagnosed with severe scoliosis and underwent her first spinal surgery. A growing rod was inserted into her back, and since then she has faced regular surgeries every six months to lengthen the rod as she grows. After many hospital stays and countless procedures, Olivia is preparing for another major spinal operation in the coming months.
Through it all, she continues to amaze her family and medical teams with her bravery and determination.
Olivia’s parents, Diane and Tony, along with her sister Hannah, have dedicated their lives to caring for her. Diane has worked as a Special Needs Assistant in a special school for 26 years, while Tony works in the hospital sector.
The family currently live in a two-storey home in Waterford, where Diane and Tony must carry Olivia upstairs to access her bedroom and bathroom. As Olivia grows older and heavier, this has become increasingly difficult and creates serious safety risks for both Olivia and her parents.
The family is now seeking support to fund essential adaptations to their home, including a fully accessible bedroom, an adapted bathroom, a ceiling track hoist and a suitable living space.
The required work has been quoted at €120,000, a cost that is beyond what the family can manage alone.
Every donation, no matter how small, will help move Olivia closer to having a safer and more accessible home where she can live with comfort, dignity and independence.
