Raising awareness in memory of little Mia
Mia Stanbridge-Harvey was born on June 3 in East Surrey Hospital last year with a rare and fatal skin disorder, Epidermolysis Bullosa (EB), which affects one in 250,000 people.
Victims' skin can be described as being as delicate as a butterfly's wing and the slightest touch can cause blisters.
The condition took Mia's life after just three weeks.
On the first anniversary of Mia's death, her mother, Sonia Stanbridge, 28, spoke to the Advertiser about her heartbreak and determination to raise awareness about the disease, which killed her first and only baby.
She said: "Everybody knew something was wrong before me – I had a caesarean under a general aesthetic.
"When I came round I was told that a team was coming from Great Ormond Street but it didn't really sink in."
"Three days later they were transferring her to the Special Care Baby Unit (SCBU) and I said 'can you tell me what is going on?'"
It was not long until it was revealed to Miss Stanbridge, and her ex-partner James Harvey, 23, that their beautiful baby girl was extremely ill.
"Once she went into the unit I didn't need to be told how bad it was – their faces told the story.
"In the first week we were told she might die, in the second week we were told she would die, and in the third week, she died."
Mia spent 12 days in SCBU before she was allowed to return home with Miss Stanbridge to her home in Crabtree Lane, Westhumble.
Added to the family's sadness was the news that both Miss Stanbridge and Mr Harvey were carriers of the rare gene.
But one of the hardest things for the family to handle was knowing that touching Mia could spark blisters.
"We weren't able to handle her. She had to lie on a pillow all the time. Her babygrows had to be worn inside out so that the seams didn't hurt her.
"She couldn't wear any of the beautiful clothes she had been given.
"I found it really hard to see her skin and I felt really scared to touch her.
"Her bottom looked like she had been scalded in a hot bath. Her umbilical cord rubbed on her stomach and left blisters.
"It was like open raw skin that never seemed to heal."
The horrific disease even caused Mia's ear to come away from her head and her fingers to fuse together.
Her Gran, Claire Stanbridge, said: "When you touched her little legs she developed blisters.
"She was very brave. Every time she had her nappy changed she needed seven dressings to her bottom."
Despite the pain, Mia wowed everyone with her personality.
Miss Stanbridge said: "She was really, really alert. As soon as she saw a new face she remembered it and bright colours made her really happy, even when she was in pain."
Mia spent her last day at Christopher's Hospice in Guildford, where she passed away in her mother's arms.
Miss Stanbridge said: "It was heartbreaking. I only had 25 days with her, but she will always live on with me and I miss her dearly."
Precious moment: Sonia Stanbridge holds her little daughter, Mia, who was born with a rare genetic condition Photo No: RSMD2239
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