The parents of a baby born with a rare genetic condition which could leave her unable to walk and talk are fundraising for specialist therapy to give her a "fighting chance"

Rosie Harrowven, from Ramsgate, was born via emergency caesarean at Margate's QEQM in June last year, six weeks early and weighing just 3lbs 8oz.

At three weeks old and on the day she was due to go home from hospital, mum Amy - without her partner Richard there due to restrictions - was told Rosie has the rare 1p36 Deletion Syndrome, meaning she is missing a part of her chromosome 1.

While it affects children differently, it typically causes weak muscle tone, seizures, heart problems, developmental delay, vision impairment, distinct facial features and difficulty talking.

Rosie's parents were at first told she would "just be small" but at a later consultation learned she does in fact face other difficulties, including with speech and movement.

Amy says happy and smiley Rosie - now aged 15 months - is doing well despite the challenges, but the family wants to do all they can to help her

"We don't know what the future holds for her - she may never walk, talk or chase after her big sister in the park - but we want to give her a fighting chance," she said.

"A lot of children with 1p36 have low muscle tone and so some won't walk until they are three, some are 10 and some are in wheelchairs.

"At the moment Rosie has poor muscle tone, so she can't sit properly yet on her own - she's not strong enough. It means she can't get into the crawling position."

Amy says they are doing all they can to help her, including private physio sessions, and they also have the benefit of her being diagnosed early.

"Early intervention is really important; some children don't get diagnosed until they're three-plus," she said.

"We've been able to start everything now and I've done so much research so we can give her the best chance to walk and talk.

"I take her to Sing and Sign to get her to learn Makaton (sign language) and she signs when she wants something to eat or drink.

"When I say 'cheese' she also smiles so it's great that she is understanding me."

Since her diagnosis, Amy, who previously worked at the Dreams store in Westwood, has been on a mission to get Rosie to reach her milestones, and during her research she heard about Footsteps - a physiotherapy centre in Oxford.

"They offer blocks of intense therapy, and other people who have used it have had amazing results," she said.

"She's so little she would only be able to do one week at a time, then have a break and then go back again.

"We're not going with the sole intention of getting her to walk, it's to help her with her core, to help her sit up and get in the crawling position, and then continue for as long as she needs it.

"Even during the one consultation we had, the positions they were getting her into were very positive."

Her parents, who also have five-year-old daughter Elsie, have launched a fundraiser to help fund the sessions and accommodation for Rosie and Amy while therapy takes place in Oxford.

Richard, who runs Longbay Shutters, will "hold the fort" at home with Elsie.

"Children with the same deletion as Rosie have used Footsteps and had amazing results," she added. "I hope this will be the same for her.

"I also hope our journey will help other families dealing with this. The information out there is so scary; it's helped me to speak to others going through it.

"My inbox is always open to parents and families who may be struggling with a child's health diagnosis. I love being able to offer support to parents who are finding it difficult, as I relate to exactly how they're feeling."

To support the fundraiser click here.

To follow her journey click here.

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