Willow Rose was diagnosed with congenital muscular dystrophy when she was just a few weeks old. Her mum and dad, Jaclyn and Mark, from Davyhulme in Manchester, are determined to raise as much money as possible to fund research into the condition so other parents may not have to hear the same news in the future.
Willow Rose was born in January 2011 at Manchester Royal Children’s Hospital. Jaclyn and Mark knew they were having a girl, and had already set their hearts on her name.Jaclyn and Mark, who also have a son named Nicholas, said, “Our family was complete, and our initial thoughts turned to future hopes and dreams for them both.”
A few weeks after Willow Rose was born it became apparent something was not right. She was generally weak, couldn’t sit up without help and showed no sign of being able to hold her head up. Tests were done and Jaclyn and Mark were given the news that Willow Rose had a condition called congenital muscular dystrophy.
The world fell apart for Jaclyn and Mark. After researching as much as they could, they came to accept there was no cure for congenital muscular dystrophy but set their minds to joining the fight to find treatments that may one day lead to a cure.
Willow Rose has regular chest infections, meaning week-long admissions to hospital are a regular occurrence. She had a nasal NG tube to help her feed when she was younger, but this has been replaced by a gastronomy button which is fitted directly into her tummy.
Wanting Willow Rose to lead as independent a life as possible, Jaclyn contacted the Bath Institute of Medical Engineering when Willow Rose was 18 months old. They lent Willow Rose a ‘Wizzybug’, a specially designed powered wheelchair for under-fives and the results have been astounding. Jaclyn and Mark saw Willow Rose gain confidence and begin to develop her own character. She was able to play with her brother Nicholas without any barriers for the first time and could choose where she wanted to go.
It was around this time the family was introduced to Muscular Dystrophy UK. Jaclyn and Mark found the information on our website to be of real value and through the charity learnt of Professor Muntoni’s research into congenital muscular dystrophy.
Willow Rose’s family has held various fundraising events to raise money to support Professor Muntoni’s research work. They are producing a recipe book to sell to work colleagues and Mark is taking on a sponsored bike ride from Land’s End to John O’Groats in September. Other bike rides are being planned for the future, including a relay ride around the Isle of Man TT course, riding from London to Paris, and also possibly riding across the USA in the next few years.
While she is a bright and happy girl, Willow Rose may have many more hurdles ahead of her “We will face these challenges together as a family and strive to help fund research work which shows promise of treatments for Willow Rose and others affected by her condition,” said Jaclyn and Mark.
How you can help
You can support The Willow Rose Fund by making an online donation.
Setting up a family fund like The Willow Rose Fund is a great way to fundraise for Muscular Dystrophy UK and help us in the fight against muscle-wasting conditions. Find out more about our family funds.