Little Madison Baldwin-Webb has had the toughest start possible to life but if it wasn’t for the love and dedication of nurses at Gloucestershire Royal Hospital, it would have been unimaginably hard.
Madison is just seven months old and has spent much of her short life in and out of hospital.
At just three weeks, her parents, from Coney Hill, were given the devastating news she was diagnosed with rare spinal muscular atrophy and it is likely to be terminal.
The degenerative condition affects the respiratory system, and is the most common form of genetic infant death. Madison has already been revived three times by doctors.
Madison’s mum Stacey, 29, said: “It is serious and we have been told Madison has just 18 months to live. She has her own room and nurses have given her all the medicine that is available to her. They are on call 24/7 and check on her all the time. Even the nurses on annual leave have been ringing up to check on her.
“She has been in and out since she was just three weeks old.
“Most of the nurses know her and have been touched by her.
“When we found out about her diagnosis, we asked the Chaplain to have her christened.
“It took us a couple of days and then out of their own pocket, the nurses decorated a room set aside for her so the family could have our own space and time with Madison. They even made her a cake and sandwiches, and bought her a dolly.”
Staff, including divisional director of women and children Paul Byrne, ward manager Diane Spiller, nurse Alison Phelps, sister Beverley Jones and Fran Maisey have all been praised and given a kindness and respect award for their care of Madison.
Charity R82 has helped secure a specialist pram for Madison to help her go outside to play with her siblings, Holly Baldwin, 11, Lilly Baldwin, nine, Lincoln Baldwin-Webb, five, and Keaton Webb, four.
Other children’s charities have also offered to pay for a family holiday to give them some lasting memories together. Stacey and her partner Andy Webb, 32, are staying at the hospital to spend as much time as possible with their daughter.
Stacey added: “I’ve got four other children and knew something was wrong. She kept picking up chest infections. We took her in and her lung collapsed.
“She spent a week in hospital and all the doctors were on her straight away.
“The first thing we asked was if there was anything we could do to help prolong her life, but the specialists said there was nothing that could be done for her.
“They are all trying hard to get her home, the staff have done wonders and have been so helpful.
“They have made us all feel so comfortable in here and know us all by name. We can’t go on holiday together at the moment as Madison is too unwell.
“Anywhere where there are other children where they can play together would be great, somewhere they will have good memories of being together.
“We have never been judged and the nurses have been diamonds.
“They fight over her in the day, and are all so caring.”
Ward manager for surgical patients and adolescents, Di Spiller said: “We were both delighted and humbled to have been nominated for this award.
“We genuinely see it as a part of our duty to provide our patients with the best care we can and we are so pleased that Madison and her family were happy with the care they received during her stay with us.”