Tube-fed girl's rare condition means mum can never have full night's sleep with her
A mum whose daughter was born with a rare genetic condition can never have a full night's sleep with her, due to the six-year-old requiring round the clock care.
Emma Reed’s daughter Erin was born with Charge Syndrome, which means she doesn’t need a lot of sleep, and consistently needs someone with an eye on her oxygen and breathing.
North Tyneside mum Emma has taken on the exhausting role of being Erin's full time carer, providing the specialist medical care and support the girl's needs day-in and day-out.
Speaking to Chronicle Live , the mum-of-two explained that Erin’s condition affects many parts of her body; Erin is tube fed, visually and hearing impaired and isn’t able to speak.
She has also had a tracheostomy fitted to allow her to breathe on her own.
“She’s just beginning to walk and although it has been challenging because she doesn’t have any balance, she loves it,” Emma said.
“She loves peeking out of windows and being nosey now that she’s on the move.”
Emma said that in a practical sense, this meant she had been unable to have a full night of sleep with her daughter in the house, since she was born.
“During the night her oxygen needs monitoring so she needs a machine which often beeps, or I’m woken up by coughing and make sure her airways are clear,” she said.
“A common symptom of Charge Syndrome is also that Erin doesn’t need a lot of sleep so often thinks it’s party time during the night.”
Every month Erin stays at St Oswald’s Hospice, based in Gosforth, for short breaks of either two or three nights.
The hospice provides a home-from-home environment and specialist medical care for Erin’s complex condition.
To mark Hospice Care Week, (October 4-8) Emma has spoken out about how her whole family benefits when Erin is at the Hospice, giving Emma and her husband Steve timeout to spend quality time together with their youngest daughter Scarlett, age 5.
“As Erin gets a bit older she is much more aware of her surroundings and has a whale of a time at the Hospice,” she said.
“She has a communication booklet so she can tell staff what she wants to do or where she wants to go, which suits her well as she likes to be bossy.
“While Erin is at the Hospice we can recharge our batteries and spend time with our other daughter Scarlett, who often comes second to her sister’s complex needs.”
While Emma said it was “always difficult” to leave her daughter, she said she trusted the staff implicitly.
“The team are absolutely lovely, kind and caring, which helps to put me at ease.
The Hospice definitely isn’t what we first imagined, it’s very different to a hospital and it’s really homely,” she said.
Last month, Emma and her family took part in the Great North Run weekend to raise money for St Oswald’s Hospice as a way to thank the charity for their care and support.