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A mum is to take to the fashion catwalk to raise money for the children’s hospice which has proved ‘game-changing’ for her disabled daughter.

Laura Hobbs-Wall will be modelling at the ‘Strength in Style’ Fashion Show in Bath in September alongside her 14-year-old daughter Amelie. The show, being held at Bath’s Assembly Rooms on 26 September, will raise money for 3 causes - Children’s Hospice South West (CHSW), Dorothy House and cancer support charity We Get It.

This is the second time that Laura, 48 and Amelie, have taken to the catwalk, also modelling at the show in 2023. Laura, from Bath, was inspired to help fundraise for Children’s Hospice South West after her daughter Elodie, now 12, was referred to the charity’s Charlton Farm hospice when she was 2-years-old.

Elodie was born with the rare 1P36 Deletion Syndrome which has left her with profound learning disabilities, suffering life changing seizures and only able to walk with a frame. Laura had enjoyed her pregnancy and gave birth to Elodie at Bath’s Royal United Hospital.

“It was a completely normal pregnancy and no problems had been picked up. However we discovered when she was born that Elodie had a cleft palette which is often the sign of other medical problems. Had that have been picked up on scans then there would have been further testing,” said Laura.

When Elodie was born, medics said she was suffering with tongue tie – a common condition on babies where the piece of skin connecting the tongue to the bottom of the mouth is shorter or tighter than normal. Elodie was taken for treatment, with the next thing Laura being told was that her baby was in the hospital’s neo natal intensive care unit (NICU)

“I was resting on the ward and the next thing I know I was being shaken awake by a registrar who told me Elodie was in NICU,” said Laura. Elodie spent the next 10 days in NICU struggling to maintain her airways. Further testing was carried out which revealed she had 1P36 Deletion Syndrome. The family were discharged from hospital and sent home with a handful of leaflets about where they could get support.

“Due to the difficulties of Elodie being able to maintain her airways, the consultant told us to go home and enjoy her,” said Laura.

When Elodie was just 15 months old the family suffered another blow when she started to have life threatening seizures. The seizures, which came in clusters, were often so severe that Laura was left to resuscitate her daughter.

“She was having eight to 10 seizures in a cluster every few weeks,” said Laura. “I had to regularly give her CPR, mouth to mouth and oxygen to bring her back to life.”

The seizures also meant that Elodie struggled to sleep, leaving Laura and husband Dave exhausted. “She would be awake throughout the night,” said Laura. “There was no respite from it.”

When Elodie was 2, their nurse and paediatrician stepped in after realising how exhausted the family had become, referring them to Children’s Hospice South West (CHSW).

The family then enjoyed its first resilience stay at Charlton Farm and has been regulars at the hospice for the last 10 years. 

“It was absolutely game-changing for us,” said Laura “We went as a family and it was wonderful to have the time to spend with Amelie and David’s 2 sons knowing that Elodie was cared for, loved and looked after.

It was the only time we got that kind of respite.

The support of the hospice meant that Laura and Dave enjoyed their first 3 night break away together as a couple since Elodie was born. “It was the first time since Elodie was born that I have actually been able to relax,” said Laura.

Knowing that she was being so well looked after by staff who can deal with all her complex care needs was just amazing. The support of the hospice is just so invaluable to us – we rely on our resilience stays.

The hospice also cared for the family when Elodie underwent complex spinal surgery in January this year. “We came straight to the hospice from the hospital,” said Laura. “Just having their support for a few days really helped us get through a very tough time.”

Laura, who was diagnosed with fibromyalgia in 2015 leaving her unable to work, says Elodie loves her stays at Charlton Farm. “Elodie likes to be as independent as she can, as soon as she is in the door at Charlton Farm, she’s off on her walker exploring. She feels so comfortable and happy there, and we know she is safe.”

Despite all her challenges, Laura says Elodie is a happy girl who loves music and being out and about.

She really is a happy, smiley and very loving little girl, she loves exploring her environment and feeling the wind in her hair. Music is one of her favourite things and she loves Pink and Katy Perry.

The fashion show will be a ‘fusion of fashion and compassion’ where guests will be able to see the latest designs from independent Bath based retailers Blue, Boho, Grace & Mabel, and Portman, as well as a fabulous sustainable set styled from the charities’ shops. Many of the models will be users or supporters of the 3 charities which Strength in Style will be raising money for.

“Amelie and I are really looking forward to getting back on the catwalk,” said Laura. “Amelie loved the experience and it really helped with building her confidence. The night was just so much fun while raising money for a great organisation which we owe so much to as a family.”

CHSW area fundraiser for B&NES and West Wiltshire Heidi Roberts said: "It was so wonderful to have Laura and Amelie model at the charity fashion show ‘Strength in Style’ last year. "The positive energy in the room was infectious and seeing the pride and beauty of the models on the catwalk was very special. They all turned into these confident models and helped raise awareness of the 3 charities involved so much."

"People who attended the show were talking about it for months after. I would urge anyone who wants to attend to book their ticket as they are going fast."

The fashion show runs from 5.30pm to late and tickets are £35. Tickets are available from Eventbrite at Strength in Style Fashion show 2024 Tickets, Thu 26 Sep 2024 at 17:30 | Eventbrite