Bubble boy is only second in the world to be diagnosed with rare immune condition

Youngster London Green, who has been in isolation for most of his life, was given a bone marrow transplant for the serious rare illness TRF8

Little London Green may be four years old but his life is just beginning.

The youngster is only one of two people in the world to be diagnosed with the rare genetic immune condition TRF8 deficiency, which means his body could not fight off infection and he would get serious episodes of high fever and difficulty breathing.

For years, medics were unable to pinpoint exactly what was wrong with London and most of his life has been restricted in isolation as he could not mix with other children or groups of people for fear he would pick up a virus that could kill him. He has not even been allowed to go to restaurants or shops.

Yet five months ago experts at the region’s Bubble Unit, based at the Great North Children’s Hospital in Newcastle, made a major breakthrough in his illness and the problem was identified.

Mother Suzi Green and partner Thomas Haworth said they feel huge relief that a diagnosis has now been made, as London is on his way to a good recovery after receiving the correct treatment.

Suzi, 29, said: “It has been a long four years and I did worry that we might never get a diagnosis for London. He has been in isolation for most of his life and he has never been to nursery, play group or an indoor play area.

London Green with Thomas Haworth at the Bubble Unit
London Green with Thomas Haworth at the Bubble Unit

“I was not surprised when I was told that London’s condition was extremely rare because he had been through many tests and examinations and lots of conditions had been ruled out, so I expected it to be unique.”

London’s life was saved less than a month ago when he was given a bone marrow transplant from an unrelated donor which was a 100% match. He is now recovering in the Bubble Unit and continues to go from strength to strength. All going well over the next few weeks it is hoped that he will get home to Scarborough, North Yorkshire, by the end of January.

Mother-of-one Suzie said: “London has not been able to live a normal life, but next year all that will change and he can start living his life to the full.

“I am really proud of how well he has coped with everything and I can’t wait to take him to play group and see him do everything that a child his age should do.”

London was born without any problems, however it soon became apparent that all was not right when the youngster would become seriously ill and have to be admitted to intensive care when struck down with even common viruses such as a cold.

He has taken a turn for the worse on a number of occasions and almost died three times. He has spent every Christmas in hospital but it is hoped that this year he may be able to celebrate with his family for the day in a hospital half-way house.

London’s speech development is slightly slower than others due to his lack of interaction with children, however it is expected that he will easily catch up once he begins school.

Fisherman Thomas, 27, said: “London has always looked ill as he’s been pale in colour, but since his bone marrow transplant he has got a bit of colour in his cheeks and I can’t describe how different he is. He has been bouncing around and is not as tired as he used to be. He has always been a happy child even though he has been through so much.

“There have been times that we thought we would lose him as he was so ill. It is such a relief to now have a diagnosis and there will be no stopping London now.”

London Green with play specialist Paula Askew at the Bubble Unit
London Green with play specialist Paula Askew at the Bubble Unit

Paediatric consultant Prof Andrew Cant, director of the Bubble Unit, arrived at the diagnosis after using a new genetic technique known as New Generation Sequencing. This procedure involves analysing the entire genetic code of a patient to find any abnormalities and Newcastle is one of only a few centres to use this process.

Prof Cant, a world-leader in his field, said: “London was quite a puzzle because he is only the second person with this condition and his symptoms were not very similar to the other person.

“It is early days since his bone marrow transplant and we need to be a little cautious to make sure that there are no complications. But if he comes through the next few weeks without any problems then there is no reason why he can’t go on to live an entirely normal life.”

London’s condition will help experts understand more about TRF8 and the youngster will continue to be monitored throughout his formative years.

Last year, The Journal launched its Bubble Foundation campaign to raise vital funds for the important charity after it was at serious risk of closure due to a sharp reduction in donations.

Little London Green ,4 is a patient at the Bubble Unit in Newcastle
Little London Green ,4 is a patient at the Bubble Unit in Newcastle

The Foundation funds pioneering research into immune deficiency problems, such as London’s, and is currently financing research programmes, in collaboration with Newcastle University, up to the value of £100,000 per year. Medical equipment, toys and educational aids are also purchased through the charity.

WE’RE urging as many people as possible to support the Bubble Foundation.

Whether it be a sponsored bike ride or fundraising night, we’re calling on our readers to dig deep and help raise vital funds for the charity.

To donate, make a cheque payable to Bubble Foundation UK and send it to: Ward 3, Great North Children’s Hospital, Queen Victoria Road, Newcastle, NE1 4LP.

For more information about the charity, visit www.bubblefoundation.org.uk and link in to their justgiving page. Or email: BubbleFoundation@nuth.nhs.uk

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