“Erin’s condition affects many part of her body and means that she needs to be cared for 24 hours a day. As well as having a tracheostomy fitted to allow her to breathe on her own, she is tube fed, visually and hearing impaired, and she isn’t able to speak. She’s just beginning to walk and although it has been challenging because she doesn’t have any balance, she loves it. She loves peeking out of windows and being nosey now that she’s on the move.
“In terms of what this means for our family practically, I haven’t had a full night’s sleep since Erin 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. 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!”
Talking about the hospice care that the whole family receive, Emma continues:
“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 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! The communication booklet was something that St Oswald’s Hospice and Erin’s school worked together on, and they’ve been working really closely together on lots of things to make sure she gets the care and support she needs.
“It isn’t just Erin who benefits from her stays, the whole family gets a lot out of her short breaks. 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. It’s always difficult to leave Erin, even though I trust 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. If there’s anyone else in a similar situation with a child living with a complex condition, I’d say to give it a try. The staff are always there to provide a listening ear and I can’t thank them enough for all they’ve done for our family, they’re all wonderful.”
Last month, Emma and her family took part in the Great North Run to raise money for the Hospice, as a way to thank us for our care and support:
“We took part in the Great North Run weekend, which was great as there’s very little we can do together as a family. Erin loved it as she was able to take part in the 50m event for children with additional needs and walked the whole day with her Dad. Scarlett took part in the junior run and I did the half marathon. It’s just our way to say thank you to the Hospice for all they do.”