An eight-month-old with a very rare muscle disease is going home from Nottingham Children’s Hospital for the first time ever in time for Christmas.
Hoppe Clarke has congenital myotonic dystrophy, an inherited genetic condition where muscles weaken and waste.
But she will be spending Christmas at home with her parents, extended family and her older sister Holly.
Tina, Hoppe’s mum who also has the condition, said: “We are so excited and a little bit nervous to have Hoppe home for the first time.
“Her big sister is so excited – it’s a mix of emotions but we are just looking forward to being able to do normal family things.”
Hoppe, from Gainsborough in Lincolnshire, is going home fully stable with a tracheostomy to aid her breathing.
Hoppe’s dad Lee Clarke said: “We had quite a few babies born in the family around the same time as Hoppe so she will have some new cousins to meet.”
The family have recently relocated as their previous home was not suitable for Hoppe’s requirements and the equipment she needs.
Due to her condition she will have a trained team of carers and an extensive care package to make sure she remains healthy outside of hospital.
Senior ventilation nurse at Nottingham University Hospitals Adele Frost said: “She has been in hospital since birth so this is a very special time for her and her family.
“A huge team of professionals from health, social, private and charities have pulled out all of the stops to get this baby home for Christmas.
“Local charities have supported the family in furnishing and carpeting their new home and the Harley Jae Trust have helped fund a specialised car seat for Hoppe.”
