Cian & Garyn

We are from Aberdare in South Wales. We went to Newcastle in August 2022 for our consultation at The Great North Children’s Hospital with our twin boys, Garyn and Cian, they were 13 at the time. The thought of having to face going through a Stem Cell Transplant was overwhelming for us and especially for the boys. The boys had Wiscott Aldrich Syndrome, Wiskott Aldrich syndrome (WAS) is a rare, X-linked recessive immunodeficiency disorder that affects white blood cells, often causing problems with excessive bleeding, prone to severe infections or cancers. It can be life threatening and lead to early death.

At the time of the boys consultation the boys were physically fit and were members of a local running club (Aberdare Valley Amateur Athletics Club) and were well in themselves apart from very low platelets, some fatigue, bruising and Cian having numerous colds, sore throats that he seemed unable to shake off even with antibiotics, nothing of which needed a stay in hospital and I suppose just seemed normal to us.

As the boys were 13 going on 14 in the October they had far more understanding of what they were facing and how frightening it all sounded, as they had never felt any different I suppose they couldn’t understand why they needed it done. It took a lot of home research, talking to family members (especially their Uncle, my brother who also has the condition) and watching peoples Stem Cell stories on YouTube for them to come around to the idea of why they needed it, not just for the boys but also for us as Parents. Wiscott Aldrich has been in my family for generations so we thought it would be something we’d have to live with and manage. Finally, we as a family decided to go ahead with the transplant and after a lot of debating between the boys Cian said he would go first.

At 14 Cian had his surgery for his Hickman line in May 2023 and we made the long car journey to Newcastle in June 2023. Unpacking everything at the hospital and saying goodbye to Cian’s dad was heart wrenching for us both, we didn’t know anyone and didn’t really fully know what was ahead of us but the nurses and doctors at the Children’s hospital were incredibly kind and supportive to both Cian and myself. The hardest part as a parent was signing the consent form for Cian to start his procedure and putting your entire trust in the medical team. Cian tried to keep fit but soon became very tired once Chemo began. Once the chemo had done its job Cian received his stem cell transplant from a German donor. Over the next few weeks he had all the side effects of chemo, sickness, chemo rash, fatigue, nerve pain and hair loss. The both boys had worried about the hair loss from chemo before they went in to hospital but when it started falling out and hair seemed to be everywhere they both couldn’t wait to shave it all off, they said they felt so much cleaner after.

Cian mostly slept for what seemed like weeks, relying on TPN and fluids, at this time he couldn’t keep and food and liquids down, he also had EBV.

Overtime the EBV corrected itself and Cian started to try eating and drinking himself, there were ups and downs with this, he tried to have a NG tube inserted but hated it and once it came out when he was sick he concluded he wasn’t having it again. Fair play he pushed himself to eat and drink, with almost daily nagging from myself. For Cian he had to drink 3 litres of water a day and this was a challenge but he became an expert on this by the end. He constantly asked the nutritionist and doctors if or when he could eat strawberries and this became somewhat of an obsession for Cian who never really ate them before.

When Cian went into the purple zone we were allowed out and tried to get out every day, even for just 10 minutes, it was hard, even getting dressed to go out was exhausting but we tried.

Time seems never ending when you’re in hospital, being away from family and home is hard on everyone, especially when Cian spent most of the day sleeping, I actually looked forward to the nurses coming in for a quick chat and especially Delfim in Domestics who always had time for both Cian and me. Cian and I filled our days by watching numerous films together and I think we became established critics by the end. I became an expert on Mario Kart and I’m sure I beat Cian once or twice even if he says different. We video called home almost every day and this became something we both looked forward to, it sounds crazy but we were especially pleased to talk to and see our pet dog, Smudge.

He started his physio very slowly, some days he just wasn’t up to it, the physio team were incredibly patient and supportive. The physio worked with Cian in the hospital room if he was unable to go to the gym. Bit by bit he started to slowly to regain his strength, his balance was a concern at first and he relied on a wheelchair for a few months. Cian made a commitment to walk outside for 5-10 metres and over time we set further distances, he relied on his wheelchair for support but this became less and less. Cian’s Dad, Garyn and his older brother Ethan came to visit and through all the tears this was such a boost for Cian. It had been difficult for them to visit being so far away and with his brothers in school and his Dad working. I spent the week with Garyn and Ethan at a hotel while Chris stayed with Cian.

It was difficult moving from Ward 3 but we settled again in Ward 4 for a week or two before they moved us out to Ward 1, I think moving again for a teenager was the hardest move for us and took its toll on Cian who for the first time broke down in tears, thank goodness the staff at Ward 1 were incredible and the play team tried to make things as easy and as pleasant as possible. Cian was struggling with terrible diarrhoea on Ward 4 so had to have a colonoscopy and they confirmed Adenovirus. Luckily he recovered from this on his own.

We moved into the halfway house, the StayBridge in September and finally things were starting to feel more like normality again and once Cian’s Hickman line was removed we were finally allowed home in October 2023, before the boys 15th birthday. It was so exciting for us, if not a little nerve wracking being away from hospital, my husband and I had quite a few restless nights worrying about Cian in his own room. Cian’s oldest brother Ethan (who was 18) is autistic and struggled with us being away for so long so he was over the moon when we returned home.

Cian worked hard to build up his strength by committing to some walking and exercises recommended by the physio team almost every day, trying everything he could to start running again. He was very tired for a long time and we made several visits to the hospital in Cardiff for his immunoglobulin infusions and check ups.

Cian had to stay in isolation until he was allowed to go back to school in April 2024.

While this was going on Garyn was preparing for his journey to Newcastle, it was difficult for Garyn as he had seen first hand what his brother had gone through and how still unwell he was when he came home. As parents we could tell how worried Garyn was, he was very quiet and had lost his love of running. We tried to keep as positive as possible but deep down I found this journey harder as I knew how much they go through.

In April 2024 we made the return journey to Newcastle to start Garyn’s Stem Cell transplant, stopping off just before to get Garyn his last McDonalds for a long while. Once there we settled in quickly, it was easier once we arrived as this time I knew most of the staff.

Garyn’s chemo and stem cell transplant went the same as Cian’s, Garyn seemed to be doing better, even eating and drinking a little but unfortunately that didn’t last and he, like his brother became quite sick. They inserted the NG tube into Garyn’s nose but unlike his brother it didn’t bother him at all which was great. Garyn tended to sleep a lot too, it seems quite normal among teenagers. He had very high temperatures but was lucky as his cells had come in relatively quickly he was able to have both paracetamol and ibuprofen to try to bring his temperature down.

Garyn also relied on TPN but struggled with sickness and diarrhoea. His temperature just didn’t improve like his brothers had and he was losing a worrying amount of weight, he’d also been in terrible pain, more than just the nerve pain teenagers often struggle with, he was placed on Fentanyl which seemed to be the only medication that reduced his pain. The decision was made for Garyn to have an emergency colonoscopy, the results showed early signs of GVHD and Garyn was put on a high dosage of steroids which, I have to say took immediate effect in bringing his temperature down and not long after reduced his pain and diarrhoea and most of all clearing any signs of GVHD. Garyn struggled with eating and drinking and relied on his NG tube for nutrition, fluid and eventually for his medication.

Once Garyn was feeling better we moved to Ward 9 and he was able to start physio as with Cian he was assigned to Simon, who, like the rest of the physio team was marvellous, he was very patient with Garyn. Garyn was determined to get back his strength, he had seen how well his brother was doing at home and desperately wanted to get back to his running and to the Athletics Club he loved, he kept up with his physio and like his brother started setting walking targets for himself outside, some days he just had no energy to do it but as time went on it became easier. Garyn relied on a wheelchair like his brother.

From being there with Cian I had learnt not to expect to come home quickly and this time didn’t fixate on the days and weeks we had been there, it made things a lot easier in the long run. I made a few friends this time on the ward with other Mams and Dads and we had our own little WhatsApp group ‘BubbleMums’, it made life so much easier just having someone you could chat to.

As Garyn improved and was having a school lesson I tried to get out more as I had done with Cian just for a short run or walk, the days seem incredibly long so I found it was good for my mental health even though I was so exhausted I could have easily have stayed in the room. We enjoyed plenty of TV series and films but when Garyn slept I found a love for reading and seemed to have my own library by the time we were coming home.

When we moved to the halfway house, the StayBridge Garyn was still reliant on his NG tube for his medication and feeds, during our time on Ward 9 I was taught how to crush and mix his medication to give them to Garyn down the NG tube, this was a tiring time as I had alarms set throughout the night for feeds and medication. Lucky Garyn started to enjoy home cooked foods again once we were in the StayBridge and along with his steroids he was taking his weight very slowly increased until we were finally allowed home in August 2024.

His recovery was slow but everyone was pleased with his progress, he came off the NG tube and his Hickman line was removed just before leaving Newcastle.

The boys not only dealt with going through a Stem Cell Transplant but also missed out on so much schooling leading up to their GCSEs, during their time in hospital they were able to have some lessons from the excellent teachers there but more often than not they were too unwell to participate. Leaving to come home I found it was a continuous battle to get support or any special consideration for the boys and had to fight for them all the time. Garyn did eventually have home tutoring but it was sometimes difficult when he was poorly.

The boys took about a year to start making very good progress in their recovery and their running is improving all the time.

They both took part in the British Transplant Games earlier this month and Cian took part in the World Transplant games in Dresden, Germany recently, representing GB. He did amazing, deciding to go up an age to race against 18-29 year olds and came home with 2 golds and 4 silvers, a silver in the 5K road race with a time of 16:22 and a gold for the GB team in the 5K (first 3 over the line from each country), he had silver in the 800m, 1500m and long jump and a gold for the 4 x 400m relay for GB.

 His brother Garyn was in hospital when Cian qualified for the World Transplant Games but is keen to take part in the next games in 2027. He did run the 5K donor fun run there and came first. They had an amazing time and made friends with other transplant patients from all over the world.

 They worked so hard to catch up in school and recently received their GCSE results with a string of A’s and B’s, they are now returning to start their A Levels, after their experience’s Garyn is hoping to become a Physiotherapist and Cian is aiming to be a doctor or someone in the medical field.

We are immensely proud of them both, they’ve supported each other through their journey’s, if not helped along with a bit of brotherly rivalry.

Kirsty - Garyn & Cian's mum - August 2025