Baby with rare muscle-wasting disease to spend first Christmas at home with Gainsborough family

Eight-month-old Hoppe Clarke with mum Tina and dad Lee. Photo contributed.
Eight-month-old Hoppe Clarke with mum Tina and dad Lee. Photo contributed.

A baby girl with rare genetic muscle-wasting disease will get to spend her first Christmas at home with her family in Gainsborough.

Eight-month-old Hoppe Clarke has Congenital Myotonic Dystrophy, an inherited genetic condition that causes muscle weakening and wasting.

Hoppe with mum Tina at Nottingham Children's Hospital.

Hoppe with mum Tina at Nottingham Children's Hospital.

And thanks to the efforts of health and social care teams, Hoppe will be going home from Nottingham Children’s Hospital for the first time.

Hoppe’s mother Tina, 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 will be spending Christmas at home with her parents, extended family and older sister Holly.

Dad Lee said: “We’re looking forward to spending time with all the family and having a big Christmas dinner.

“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.”

Hoppe is going home fully stable with a tracheostomy to aid her breathing.

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.

Adele Frost, Senior Ventilation Nurse at Nottingham University Hospitals, said: “We are all delighted that Hoppe is going home.

“She has been in hospital since birth so this is a very special time for her and her family.”

The grateful family have recently been relocated as their previous home was not suitable for Hoppe’s requirements and the equipment she needs.

Adele said: “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.”

Nottingham University Hospitals and community partners will continue to support Hoppe and the family.