Seth's story

Catch up on the Story

If you’ve been anywhere near a computer, smartphone or tablet over the past week or so, the chances are you’ve already heard about the #wearyellowforseth campaign. With coverage on news outlets as diverse and far-reaching as ABC, CBS, the Daily Mail and BuzzFeed. But for those of you not in the know, or for those who simply want to learn more about this inspirational trend and the story behind it, we’ve compiled the story of this extraordinarily brave little boy, and the charity he has brought so much attention to.

Who is Seth?

Seth Lane, from Northamptonshire, is a 5 year old patient in the Great North Children’s Hospital in Newcastle. Born with a very rare genetic disorder, known as Severe Combined Immunodeficiency (known as SCID, or ‘bubble baby disease’ for short), Seth has no immune system, which means that he has spent most of his young life living inside a specially sterilised room so as to avoid any potential infection because he doesn’t have enough white blood cells to fight them off. This makes so many simple things, like giving him a cuddle or playing a game with him very difficult indeed. In fact, before anyone can even enter his room, even Mum and Dad, they have to scrub their hands and wear special plastic gowns to stop the spread of germs. So if his parents, or any of the nurses who take care of Seth everyday have a cold, they can’t enter.

How did #wearyellowforseth come about?

The idea for the #wearyellowforseth video came about around the time it was revealed that Seth would need a second bone marrow transplant to stand a chance of survival. As Seth’s Mum Leanne writes, ‘4 and a half years ago, as Seth was approaching his first bone marrow transplant, an old friend of mine was also battling leukaemia. She was a big supporter of Seth and spoke to me about the significance of the colour yellow in relation to immunity. Apparently it signifies a strong immune system. So we had the idea to ask people to wear yellow to show support on his transplant day. We were astounded to see so many friends, family members and colleagues post pictures of them wearing yellow! It was amazing for us as his parents to see people were thinking of our baby!’.

How many people have shown their support for Seth?

The short answer is: loads! The response to Seth’s video has been, to put it mildly, incredible! With over 20 million views worldwide, and a number of news outlets around the world showing Seth’s video, #wearyellowforseth has become a worldwide phenomenon, and has helped to shed some light on the struggle faced by families affected by SCID.

So when Leanne and Seth’s Dad, Nik, were told that the first transplant hadn’t worked, they decided to try this again and get as many of their family and friends as possible to wear yellow both in support of Seth and because, funnily enough, his favourite colour had become yellow! Nik filmed Seth holding up cards from his bed in hospital explaining what he had been through and asking people to join in to show their support, and from there it spread much wider than either Leanne or Nik could have possibly imagined.

The Bubble Foundation

Although it’s incredibly encouraging to see such a strong show of support from around the globe for an incredibly brave little boy, it’s important to remember that, whilst extremely rare, SCID is a condition which affects many other young children, many of whom will die before their first birthday without proper treatment. In fact, through the efforts of The Bubble Foundation, who provide care for children born with immune deficiencies as well as conducting research into SCID and new ways to treat it, the survival rates of those diagnosed with SCID have risen from 50% to 80% in 2012. But if all of this good work is to continue, it is vital that the foundation continues to receive funding to be able to both provide the care and the technology which is so desperately needed for those born with SCID.

So what can you do to help?

Fortunately there are a number of things you can do to help support Seth and the charity that helps to care for him. You can show Seth that he’s in your thoughts by wearing yellow this Friday 27th March and posting your pictures on Facebook, Twitter and Instagram (or all three!) using the hashtag #wearyellowforseth. And if you want to donate to The Bubble Foundation to help the staff at the Great North Children’s Hospital take care of Seth and others like him, as well as fund research into SCID, you can either visit their JustGiving page, or text your donations by sending SETH 05 followed by the amount you would like to donate to 70070.

You can follow Seth’s progress, and continue to show your support for this inspirational little boy, after the operation on March 27th by following us and Seth’s parents on Facebook, Twitter and Instagram. And be sure to keep an eye on us here at The Bubble Foundation as well for updates on Seth’s progress, and our continued effort to make sure that one day every child born with SCID survives.