Freya's Steps appeal stages charity concert to help Drefach Velindre youngster

She hauls herself off the settee, gently lowers herself onto the floor and crawls over to the tv screen where she points earnestly at Marshall. She turns to me and gives me the biggest smile imaginable.

“At the end of the day, limbs are just limbs,” says her mother, Danielle from their home in Waungilwen near Drefach Velindre.

“We’ve known for a long time that both Freya’s legs were going to have to be amputated but with the technology that’s available today, there’ll be a time when there’ll be nothing that Freya can’t do”

Freya was born at Glangwili Hospital in September 2017, but from the outset, it was obvious that things were far from right.

“Both here legs were seriously curving in,” explains Danielle. “Initially, we were told that this could have been the result of her being a breached birth. Curved legs can be a common symptom.

“Then it was suggested that she could have had talipes, or club foot, but both my husband and I thought it was something more. Those first few days at hospital were very hard for us as Glangwili doesn’t have an orthopaedic specialist so we had no way of finding out what was wrong.”

Danielle and her husband Michael began carrying out their own independent research and after comparing Freya’s symptoms with similar cases which they found online, they feared that their daughter could be suffering from Tibial Hemimelia which is an extremely rare condition that affects just one in three million people.

Three weeks later the Gibbs family were transferred to Morriston Hospital’s paediatric orthopaedic unit.

“But even then, the consultants weren’t 100% convinced of their diagnosis because the condition is so rare,” continues Danielle.

Freya was eventually transferred to the Cardiff Children’s Hospital when she was four months old and it was here, following a lengthy series of tests and scans that consultants confirmed that Freya was indeed suffering from Tibial Hemimelia.

Freya had been born with only the fibula, or calf bone, present in both of her legs. She didn’t have the tibia, which is the strongest and largest of the lower leg bones and neither did she have knees. Although she had ankles, they were incapable of movement.

“It was a very difficult thing for us to come to terms with,” continues Danielle.

“Naturally I’d been having scans throughout my pregnancy where the bones of the foetus were measured to determine the baby’s age but obviously the tibia had never been measured.

“Instead, it had probably always been the fibula so there would have been absolutely no way of knowing the extent of Freya’s problem. I’ve tried to imagine how I’d have felt if I’d discovered the truth during my pregnancy.

“Obviously it would have been a shock, just as it was when we eventually found out, but then again I would have had to have lived with this knowledge throughout my pregnancy and I don’t know how I would have coped with this. Maybe it’s for the best that we found out when we did.”

Once the diagnosis had been made, Danielle and Michael knew that their little girls would have to undergo amputations on both her legs. But first, she had to have further scans on her heart, liver and kidneys to ensure they would be able to withstand surgery.

“Her liver and kidneys were fine but the scan picked up a small hole that she had in her heart.”

And so, two days before he first birthday, Freya was sent to Bristol Hospital where the hole was successfully closed up. In February of this year she returned to Cardiff Children’s Hospital for the amputation of both her legs from the knees.

“Even though this was a very anxious time for me and Michael, we knew the amputations had to go ahead as Freya had by now reached the age where her condition was starting to hold her back.

“She’s a strong little girl and had started crawling, walking on her knees and climbing the stairs. It was obvious that she desperately wanted to walk but she couldn’t. But having said that, the week we spent with her in Cardiff Children’s Hospital was horrible.”

During the time I spent with Freya and Danielle, it is obvious that this is one extremely courageous child who is determined to do all she can to get past the hurdles that lie ahead. And there are likely to be many. Last August she was given two new prosthetic sockets by the NHS which are fitted over both her kneecaps and the day before I visited, she had received her new prosthetic legs and feet.

“Yes, and the trouble is, she hates them!” laughed Danielle.

“She’s got on really well with the sockets and has been happy to wear them, but the legs are a different story. I think it’s because she hates dolls and the legs probably remind her of a doll’s legs.

“This is also the first time that she’s ever had straight legs so this must be a very difficult thing for her to understand and accept. We’ve tried covering the legs with Peppa Pig stickers but she’s pulled them all off, so obviously she doesn’t want Peppa Pig anywhere near them!.

“All we can do is leave the legs lying around so she can play with them and get used to them in her own time.”

Whilst the new prosthetic legs will enable Freya to walk short distances, they aren’t designed to run, jump or keep up with the demands of a happy, active child.

“As soon as she starts school and doing things like PE and playing games in the playground with her friends, she’s going to struggle,” says Danielle.

“The legs she’s currently got are fantastic for everyday use but she won’t be able to run in them. So she’s going to need a sports prosthetic which has a blade at the end instead of a foot.”

Sadly, while £4m has been set aside in England to help the NHS fund children’s sports prosthetics, Wales and Scotland are once again falling short.

“The NHS have been fantastic to us every step of the way but there’s no guarantee that their funds will be able to provide sports prosthetics when Freya reaches the stage when she’ll need them.

“We don’t want to find ourselves in a situation, two years down the line, of not being able to afford the £10,000 needed for a pair of prosthetic legs.”

And so earlier this year the Cardigan Charity Fundraising Appeal launched Freya’s Steps.

“The response has been fantastic,” concludes Danielle. “Derek Burton and the Cave Girls raised £3,000, Penboyr School raised £1,000, the Syran Kebab shop in Cardigan donated an entire day’s takings which resulted in £2,000 and the Cereidwen Centre have donated £2,000. We can’t thank people enough.”

To help reach their £10,000 target, an evening of cocktails and music will be taking place at The Guildhall, Cardigan on Saturday, October 26 featuring Kirilee, Des Perenara, The Welsh Guitar Duo, Ceri Davies (tenor), The Cwm Cerwyn Ensemble, Rosalind Powell and Sarahjane Absalom (folk harp).

Tickets are priced £6 (from Awen Teifi, Queen’s Bakery or any committee member) or £8 on the door. Doors open at 6pm and cockatils will be served between 6.30pm and 7.30pm