When Samaviya Mahmood, 14, found out she had been selected for a trip to Orlando with Dreamflight in 2023, she could hardly believe it.

“Samaviya had never even been on holiday, let alone on such an amazing one as that. She had been so poorly for so long, she had never really spent time around other children and was always glued to some gadget, so it was a complete step out of her comfort zone,” says her mum, Nazya. “However, it ended up being by far the best thing she has ever done. It was completely life changing.”

Samaviya was born with a rare genetic condition called cystinosis, which causes the amino acid cystine to build up and crystallise in many organs of the body, starting with the kidneys. “I have two sisters with the condition, so my other three children were tested for it at birth.

However, Samaviya’s first blood sample got lost, then a subsequent one taken two months later also did. By this time, she was nearly four months old and she was doing well – drinking milk, putting on weight and doing the normal things babies do – so I wasn’t worried and didn’t take her for more blood tests.”

When Samaviya was six months old, she started nursery. “A few weeks later, I got a phone call from the nursery asking me to come in for a chat as they were a bit worried about her because she was sleeping so much. I made an appointment with the GP, who told me to take her to the children’s hospital where she was monitored for a day, but they weren’t very worried as her blood tests were all fine.”

Not long after, Samaviya woke up one night crying for milk. “I had noticed she was drinking quite a lot of milk, so her dietitian had advised me that day to just offer her water instead if she woke in the night, so I did. She had three bottles of water but was still crying – a really strange cry, like she was in pain – so my husband went and got her another bottle and she snatched it and gulped it down. We decided to forget what the dietitian had said and give her some milk, but she refused to take it and just wanted water.”

The next morning, Nazya’s mum called and asked how Samaviya was doing. “I told her what had happened and she said, ‘She’s got cystinosis.’ I said, ‘No, she can’t have, she’s fine,’ but she insisted I take her to the hospital to be tested, which I did. I was so sure it couldn’t be happening – I didn’t want to believe it.”

Two weeks later, Nazya went to get the results. “I walked into the doctor’s office, looked at the desk, saw the medication out and my heart just sank. I recognised it as the one my sisters took and immediately knew her diagnosis. It was devastating and I worried about my three other children and how they would cope, having been through it myself, with my mum spending months in hospital at a time.”

Samaviya was given an appointment at Great Ormond Street Hospital the next day. “She had a gastrostomy, which is a procedure to make a hole in the stomach to insert a tube to administer medication, as she was on so much medication, there was no way she could take it all orally. Unfortunately, there is no real cure for cystinosis, but she had medication to top up the vitamins and minerals she was losing from drinking so much water, plus one to help control the cystine levels so they didn’t cause as much damage.”

When Samaviya was nine years old, her kidneys failed, and she was started on hemodialysis – a procedure whereby a dialysis machine and filter are used to clean the blood – in hospital three times a week.

“It would take us about an hour and a half to get there, then she would be there about five hours. She had to reduce her fluid intake to 500ml, which we really struggled with, as it was impossible to watch her all the time and she was going down for water in the middle of the night, or drinking in the bathroom, so she had to start having an extra day of dialysis on Saturdays. She had no social life and was spending minimal time in school because she was so poorly and was constantly in hospital or recovering.”

In November 2022, when Samaviya was 12 years old, the hospital found her a kidney donor. “I was quite worried, as I’d been through transplants with my sisters and knew it wasn’t an easy road, but Samaviya thought she was going to go in and get the transplant, then walk out of the hospital ten days later and be able to lead a normal life.”

Unfortunately, the transplanted kidney developed a fungal infection in the first few days. “She became very, very poorly and things were touch and go. She didn’t end up coming home until three months later and was on antibiotics for a year. Plus, the psychological effect on her was huge.

“She was also often around her aunties, who are only in their 30s, have had four transplants each, are back on dialysis and have lung failure, so she became very aware of the things she may face in the future. She would ask lots of questions about what might happen to her in the years to come, which unfortunately, we couldn’t always answer.”

In October 2023, less than a year after having her transplant, Samaviya flew to Orlando, Florida, for ten days. “She was nominated for the trip by staff from the dialysis unit and it came as a big surprise. She had been by herself so much and has selective mutism, so we knew it would be a big change for her. But it would also be an opportunity for her to meet other people and make friends, as she had never had that chance, and she ended up having an amazing time!

She went to all the theme parks and swam with dolphins, which is something she still talks about a lot. There was another girl her age sharing a room with her – they paired them so well and they really got on and have stayed in touch. The group leaders also made her feel really, really important.”

Since the holiday, Nazya has noticed a change in Samaviya. “Before the trip, she was very clingy, and if anyone asked her a question, she would wait for me to answer, but when she was away she had to make her own choices on things like food and what to wear and she learnt she could cope without her mum and dad. In those ten days, she really grew up and her confidence improved.

“I am so grateful to Dreamflight, as what they offer the children they take away, who have to deal with so much on a daily basis, is just life changing. For Samaviya, being able to have ten days where she could just enjoy herself, live a normal life and make lasting memories doing things she could never have even dreamt of was so important. It really was the trip of a lifetime.”

Amount raised: £74,774

Dreamflight will use the money raised in the Candis Big Give to change young lives by taking children with a serious illness or disability on the holiday of a lifetime to Orlando, Florida.

The money will help to send 192 children on a ten-day trip in 2024, including covering the cost of tickets into six theme parks in Orlando for all 192 children. The children will be divided into 12 regional groups, each of which will have 16 children. Within each group there are eight volunteers, including one paediatric consultant, three paediatric nurses and a paediatric physiotherapist, as well as non-clinical volunteers. Each volunteer looks after two individual children, to ensure they have all the attention, care and support they need on the trip.

The children will go to a theme park each day, including a water park and a park where they get the opportunity to swim with dolphins. In the evenings, there will be activities back in the hotel, such as a talent show, disco and Halloween party. Dreamflight also hosts a reunion party for the children after the trip, where they can catch up with friends and reminisce on happy memories from their time away.

The trip gives the children a muchneeded opportunity to have fun, build their confidence and develop lifelong friendships on the holiday of a lifetime.

Please visit dreamflight.org or telephone 01494 722733 for more information.


Ben Stevens, paediatric nurse and NHS director, explains why he loves volunteering for Dreamflight

“I first started volunteering for Dreamflight in 1999 after my wife’s colleague mentioned they were volunteering on a trip and they needed a nurse to fill a space. I am a paediatric nurse, so they spoke to me about it and it sounded like such an amazing experience. Since then, I have volunteered on 18 trips, initially as a nurse, then as a deputy group leader and senior nurse.

For last year’s trip, I was the group leader for the Pooh Bear group – which is the group for children who live in the southeast – so I was responsible for doing the organisation for that group, including selecting the volunteers, working with a doctor and a nurse to select the children who would attend from the nominations we received, and working with the team to make sure everything was in place with supplies and medication.

I was then in charge of the group once we were away, and coordinated the trips to the theme parks, making sure the children had an amazing time. It’s a wonderful experience, as you can really see how it benefits the children in such a variety of ways. It gives them the chance to spend time with children who have been in similar circumstances, and they often grow in confidence during the trip. We have had some children who have gone on to become Paralympians, who said Dreamflight was a contributor in helping to build their confidence and independence. For many of the children, this will also be the first holiday they have ever been on.

Seeing the absolute joy on the faces of the children when they accomplish something they never thought they would be able to do – whether going on a plane for the first time or riding their first rollercoaster – is just amazing. The children overcome fears and barriers, make lasting friendships and grow in their confidence and abilities across the week, and it’s often one of the most positive experience of their lives.”

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