An Ipswich couple has pulled together their wedding in a matter of days to make lasting memories with their family after a change in their two-year-old daughter's health.
It was smiles all around as Ben and Amy Norton tied the knot in Bury St Edmunds on a sunny Thursday afternoon.
Many would not have known the efforts from the community and the family to rearrange everything a month early to ensure Evie would be able to be a part of it after her health recently deteriorated.
“She’s come home to say goodbye to everyone, and to enjoy whatever time she has,” said Amy.
The two-year-old was born with a rare muscular disorder and while she has spent most of her life around hospitals is described by her parents as the "funniest little character".
And on Thursday, alongside her sister Maisie, the pair arrived at the ceremony in their beautiful white dresses, delighted to be flower girls on their parents’ special day.
“She’s perfect,” said Amy. “She’s sassy, she’s got an attitude. She is the funniest little character ever.
“If she shows you love, you are lucky. That’s the sort of little girl Evie is.”
Amy and Ben had intended to tie the knot on September 29 but last week met with Evie's doctors and made the decision to bring forward their big day to ensure she could be a flower girl alongside her sister.
Evie was born in November 2020. Amy had no complications during her pregnancy, but as a newborn, Evie was often unwell and had bronchitis several times.
Whilst she was in hospital, a doctor noticed that Evie’s muscle tone was severely low. Within three months, she had been given a diagnosis of a rare condition called nemaline myopathy.
Nemaline myopathy causes weak muscles, decreased muscle tone and reduced reflexes and Evie required a feeding tube.
“The first year was extremely hard,” said Amy, 26. “The hospital became a second home.
“Everything was going well, but then in October 2022, she was diagnosed with gut failure because her stomach stopped working.”
Muscular Dystrophy UK estimates that the condition affects around one in 50,000 people.
Evie’s nemaline myopathy was caused by her Acta1 gene, which, Amy explained, makes her condition even rarer.
Instead of her muscles growing as they should, Evie’s muscles stretch. This includes her heart, lungs, and stomach.
Since then, Evie was fed through a tube, which fed her continuously for 24 hours a day in very small amounts.
However, Evie’s health recently deteriorated, and her tube is no longer working.
The couple were able to hold their big day on Thursday, August 24, with Amy and her daughters arriving at the registry office in Angel Hill, Bury St Edmunds.
Waiting for his bride, Ben said that his family had all pulled together to make the day happen.
Maisie and Evie were at home getting ready with their mother, and were excited to have their nails painted especially for the occasion, Maisie’s in pale pink while Evie had chosen blue.
Soon, Amy arrived in a crisp white dress. Jamal from Just a Day Bridalwear in Ipswich had been working flat out to have the gown ready in time.
When it was time to depart, Amy, Ben and Maisie left in style, in a vintage Cadillac provided by Mark Beadsworth, Evie having gone home a little earlier with family.
In the days to come, the family are hoping to celebrate an early Christmas and birthday with Evie.
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