A TASTE OF FREEDOM

Crystal Edwards was enjoying a trip to Albania to visit family at the end of 2020 when she went into premature labour. “I had had anormal pregnancy with no concerns, so I thought at six months it was fine for me to fly abroad. However, I started havingconcerns when I was there, so I went to a private hospital where I was admitted.” On 4 December, her daughter Boronica was born at 29 weeks and 4 days.

“She was put in an incubator and on a ventilator. Over the next few weeks she had a blood transfusion and was treated for jaundice and suspected sepsis.” Boronica was also given two ultrasounds, followed by an MRI when she was four weeks old. “After the MRI, the doctors sat us down and told us the scan showed she had a brain injury called Periventricular leukomalacia, which occurs most commonly in premature babies or those born at low birthweight. They didn’t go into much more detail at that point about what that meant, but it was very worrying for me and my husband.”

Two months later Crystal and her husband flew back to England with their daughter. “My expenses had luckily been covered at the hospital by an insurance policy I had in the UK with my bank but, because I had claimed on the insurance, the repatriation team wouldn’t allow us to come back to the UK unless we were being returned to a hospital. We were given an appointment with the neonatal team at the hospital where I had been due to give birth and were flown home on a private plane.

“The doctors sat us down with the MRI that was taken in Albania and they were very honest and said the MRI showed the severity of the brain damage, which was graded three out of a possible four grades. They said it showed clearly she was going to have spastic quadriplegic cerebral palsy, it wasvery unlikely she was going to be able to talk or walk and she would have cognitive delays.

“They gave the worst outcomes to make sure we were prepared, but it was devastating to get all that information. However, it was also really important, as they put us in touch with the community team including a dietitian, speech and language therapist, occupational therapist and physiotherapist. That was so useful, as the early intervention meant we were able to get to grips with what was going to happen in the future and get the best support for Boronica to help lead to the best outcomes.

“At that stage, we weren’t sure if Boronica would be able to eat or if she would need to be tube fed, so we worked very closely with a dietitian, but thankfully it became clear she was able to swallow and wouldn’t need a tube, so we were discharged from that service.” Boronica ended up surpassing many of the doctor’s expectations. “She has been categorised as level 4 on the Gross Motor Function Classification System (GMFCS), which is a tool that categorises the gross motor function of people with cerebral palsy into five levels, with those at level 5 having the most severe cerebral palsy motor symptoms and requiring the most mobility support. However, she’s had a really good outcome compared to what could have been.

“She is able to sit unaided for a long period of time, which is something we’ve worked really hard on with therapy input. She doesn’t stand or take steps unaided, but she can do both with the support of a carer or with equipment. She has quite a high therapy input, so we hope in the future we will be able to get her to stand and take steps, maybe with a walking aid, although that’s not predicted for her GMFCS level. Cognitively, I would say it has affected her. She is a one-word user and has limited vocabulary, she struggles with planning and execution of small tasks, and you have to repeatsomething several times over a long period before she fully understands it. She will probably be best in a special needs setting when she goes to school so she can keep up with the curriculum.”

“We found out about Action for Kids (AFK) from a company that makes assistive devices. I contacted them directly and within a few days our application for the trike was approved and we were given a Theraplay Trike in. Boronica’s favourite colour, pink.” Boronica was thrilled to receive her trike, and Crystal noticed significant benefits from her using it. “From a medical point of view, we found it really helped with her recovery. We were told at the hospital she had really bounced back quickly with gaining her strength back, and I think having the trike prior to the operation contributed to that.

The trike has unlocked another form of independence. She can’t go on a normal bicycle but it’s given her the equivalent, so Boronica can get out and experience the benefits of exercise and being in the fresh air like any other child, and she can have fun playing outside with her two-year-old brother. We can also look at going to things like weekend cycling clubs in the future. Boronica also regularly uses the trike with her grandparents – some of the equipment we get from the NHS can be quite complicated to use, so my mum and certain carers might not feel comfortable using it, but the beauty of the trike is that anybody can take her out and use it, as it’s really straightforward.

“The multidisciplinary teams that have been involved in Boronica’s care have been amazing, but we know as she gets older it will probably be less about formal therapy input, as she would prefer to beout with her friends than spending time doing that, so things like the trike are really important. The more she can feel included, independent and able to do things in society the better quality of life she will have, and having equipment like this helps with that.”

THE CANDIS BIG GIVE AMOUNT RAISED: £20,782

• AFK creates opportunities for children and young people who are disabled or neurodiverse to live more independent, fulfilling lives. AFK provides mobility equipment and supports disabled or neurodiverse young people into employment by working with schools and colleges, providing employment coaching and supporting young people to set up their own small businesses.
• The money raised in the Candis Big Give will help the charity to provide and maintain mobility equipment for disabled children and young people. This includes disability trikes, powered, manual and sport wheelchairs, power add-ons for wheelchairs, car seats, buggies and walkers.
• Last year the charity ordered more than 160 items of equipment that people often can’t get from the NHS, such as power chairs. With power chairs, children gain the independence they need from a very early age.
• As well as supplying equipment, the charity maintains the power chairs it provides. Many young adults the charity supports aren’t able to do paid work, so this is a valuable service.
• Visit afkcharity.org to find out more.