‘Strangers did amazing things for the boys. I want people to know they’re smiling every day’

November 6, 2015
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As the Anthony Nolan Supporter Awards approach, we’re getting ready to celebrate and recognise our incredible supporters across the UK. Here, we share the poignant story of two of this year’s nominees for Young Hero of the Year – 8 year-old identical twins Kian and Luis King.

Identical twins Kian and Luis King will be recognised at a national charity awards ceremony after a gruelling year of treatment which saw them separated for three months.

Eight year old Kian and Luis from Sileby in Leicester have been shortlisted for Young Hero of the Year at the Anthony Nolan Supporter Awards after inspiring hundreds of strangers to become potentially lifesaving stem cell donors.

Heartbreakingly, the lively ‘football-mad’ twins didn’t see each other for three months after they became the first children in Britain to undergo stem cell transplants for Juvenile Krabbe Disease.

They had to be separated to avoid the risk of infection so their only contact with each other - and with all  their friends and relatives aside from their parents Laura Otter and Dean King - was through a glass screen in Birmingham Children’s Hospital.

But just nine months after launching a desperate appeal to find stem cell donors for the boys, they are now back home, improving every day and celebrating being shortlisted for the prestigious award.

"I want people to know that there’s hope"

Laura Otter said: “When this all started, it was all about the boys and finding a way to help them. I remember feeling like we were the only people this was happening to.

“But along the journey, it became clear that this appeal wasn’t just about our family – there were hundreds of families all over the country in the same position as us, desperately waiting for a donor.

“I want people to know that there’s hope, and that we’ve not finished. We will keep fighting for them and supporting Anthony Nolan. Strangers did amazing things for the boys and I want them to see what the impact has been.”

Kian and Luis have an extremely rare and life-threatening genetic condition called Juvenile Krabbe Disease. Doctors advised the only way to stop the illness progressing was to give the boys stem cell transplants – but first they faced a race against time to find matching donors before the boys deteriorated too far to undergo the procedure.

They captured the nation’s hearts when the family went public with the urgent search for a donor, making front page news. During the appeal, Kian and Luis inspired four times the normal amount of people signing up to the register, and a donor recruitment event was held which the twins attended.

Anthony Nolan searched cord blood banks worldwide for matching stem cells, after no suitable matches were found on the worldwide registers of over 25 million potential adult donors.

To the family’s relief, the team at Anthony Nolan were able to identify two units of umbilical cord blood containing stem cells which match the twins’ tissue type. The transplants went ahead in June this year.

However, Luis unfortunately rejected his first transplant, and there were no further cord cells available from the same donor.

Dean King, the twins’ father, was thankfully found to be a ‘half-match’ and donated his stem cells to Louis.

"Stem cell donation is nothing to be feared"

Dean said: “When we were told Luis’s first transplant had failed, we were devastated, knowing how hard it was to find a donor for the boys in the first place.  But after having tests, I was found to be a 50% match for Luis, so the consultants agreed I would be able to donate my cells to him.

“Being a stem cell donor isn't as scary as it sounds. I had to have injections for four days to stimulate stem cell growth and then donated my cells. All you have to do is lay there with your arms straight watching TV or having a chat. It’s a very simple process and the time passes quickly.

“I can now say from personal experience that stem cell donation is nothing to be feared, and it was just an amazing feeling to do something so important for Luis.”

After a promising start, the family received another setback when Luis once again began to reject Dean’s cells. The family feared the worst but Dean provided top-up cells and the doctors put Luis on plasma exchange therapy – something that doctors said had only been done once in 10 years.

To the family’s immense relief, Dean’s cells started to engraft and, after 18 weeks in hospital, Luis is now back home and doing well.

"To know that Kian and Luis have inspired so many people and helped save lives makes us proud beyond words"

“It has been a gruelling summer for Luis and Kian,” said Laura. “There were glorious hot days where I wished they could have been playing outside in the paddling pool, but instead they were in air conditioned hospital rooms, separated from one another.

“But the boys coped amazingly and they took every day in their stride. They were still smiling every day and loved chatting to all the doctors and nurses. We’re all so proud of them, and I don’t think anyone else could have coped so well.”

Kian and Luis still need to be careful to avoid infections and their food is being strictly managed – for example they cannot eat raw vegetables or eat from shared packets. They also have a daily routine of medicines, physiotherapy and clinics.

But doctors are happy with the boys’ progress, and they are gradually getting back to enjoying their childhood. Kian and Luis are now being home schooled three days a week.

The family were thrilled to hear the boys had been shortlisted for the Anthony Nolan Supporter Awards. “Thanks to Anthony Nolan, Kian and Luis have the chance for a longer and happier childhood. After everything they’ve been through, it’s so lovely for them to be nominated for this award. I’ve told them it’s like getting a prize at school,” said Laura. “I’m extremely honoured and proud to be their mum. To know that Kian and Luis have inspired so many people and helped save lives makes us proud beyond words.”

The awards ceremony takes place on 17th November in the House of Commons and winners will be announced at the event. For more information, go to www.anthonynolan.org/awards