15-month-old Ophelia has a rare genetic disorder that only affects 12 children in the entire world. Seven weeks after she was born the little girl was diagnosed with a condition called neurodegenerative condition RNF13.
She has the abilities of a newborn baby despite almost being one-and-a-half years old. Little Ophelia has up to 20 seizures a day and depends on oxygen day and night.
Her condition also means she has a reflux that can make her choke and is fed through a tube. She also cannot sit up and is reliant on others to move her.
Speaking to Plymouth Live, mum Danielle said: “If Ophelia isn’t carefully positioned to protect her airways she can stop breathing. She’s been admitted to hospital several times – in fact so far this year it adds up to about a month. There are times I worry she won’t survive. She can become rapidly and unexpectedly ill, so always needs someone with her.
“With this bed when we are at home carers could watch over her at night, keeping her safe while I sleep, so as well as protecting Ophelia during in the night and keeping her much more comfortable, it would make my life easier and help me care for her in the day too."
On her daughter's care, the mum added: "Without it, it would be very hard to care for her 24/7. It’s been very difficult to deal with such an unexpected diagnosis for my daughter and we have spent a lot of time in hospitals, this bed would also really help us have some normality at home.”
Ophelia needs a special adjustable bed that would make it easier for Danielle to look after her. The bed can be raised and lowered, and has an adjustable back rest to protect her airways - this works by positioning her head at the right angle.
It also has padded sides that would protect her during seizures and its larger size would ensure Ophelia’s comfort, even when surrounded by tubes and equipment. However, this bed costs £6,230.
Newlife, a charity for disabled and terminally ill children, is appealing to help raise the funds for the bed. Kam Dulai, Newlife’s child and family support manager said: “Not only will this bed keep Ophelia safe and ensure her carers can continue to provide vital support to the family, it will boost the quality of life for both Ophelia and Danielle – and anyone who can donate to this appeal will be directly helping to change their lives for the better. We know they will be incredibly grateful for any support received to help fund this appeal.”
To donate please visit newlife.support/Ophelia
