One Boy Fighting Leukaemia and Lager

Our Mission 
To build the finest residential, recreational and therapeutic centre for teenagers with cancer in the UK.

I'd like you to meet Deryn, he really is unique. 

In fact, he's 1 in 7 Billion!

 In 2010, Deryn was diagnosed with Acute Lymphoblastic Leukaemia and just 18 months later and whilst still on active Chemotherapy - Deryn was diagnosed with an extremely rare Cancer called Langerhans Cell Sarcoma.

There have been as few as 50 cases of LCS documented since records began and Deryn is believed to have been the youngest of the 5 people currently alive with the disease worldwide.

To make Deryn rarer still, he was thought to be the ONLY ONE in the entire world to be fighting Langerhans Cell Sarcoma and Leukaemia together.

Because of the extreme rarity of his diseases combined, the specialists really didn't know what to do. 

So after much consideration from all over the world, they decided that after extensive and invasive surgery to remove the sarcoma (Deryn had his tonsils and a third of his throat / soft palette removed) a bone marrow transplant was his only option. 

The Dr's were very honest and are were not sure if a bone marrow transplant would prevent either cancer returning but Deryn wanted to take the chance.

In October 2012, Deryn went into hospital to start 5 months of preparation, this involved giving Deryn as much radiotherapy and chemotherapy that they could 'without killing him'

On 1st March 2013, Deryn had a bone marrow transplant.

Shortly afterwards, because of a virus he needed some more cells from his donor. 

Unfortunately on August 29th 2013, this transplant completely failed and he needed his own cells back to rescue him. 

On 17th October 2013, his own cells failed because of extremely rare complications.

Thankfully Deryn had one more chance left, he had one more bag of his own cells. 

The Dr's gave Deryn more chemotherapy and on the 29th of October 2013, Deryn has his own and final bag of cells transplanted into his body. 

Three days after the transplant, Deryn trapped his fingers and suffered TWO catastrophic infections in his hand.

He had Cellulitis and Herpes whitlow in his hand and he also had Klebsiella in his mouth, another catastrophic infection. 

40 days after a bone marrow transplant, the Dr's told us that it is highly unlikely that someone will graft if they haven't already - after 50 days there is no way someone can graft. 

In their experience, no one has ever grafted after 50 days.

On December 11th 2013, at day 46, we were moved to a hospice where it was expected that Deryn would die within a few days.  

We were told that Deryn's fourth and final transplant had in fact failed and there was nothing more they could do, it was believed that once they took away the life supporting drugs that Deryn would leave us very quickly. 

Deryn had NO immune system and NO way to fight off even a simple cold.

After two Christmases, one New Year's Eve and quite a few worrying moments, on day 78 Deryn's bandages accidentally came off his fingers and he was - infection free! 

Deryn continued to improve and he started to produce his own blood products. 

On day 104 - Deryn officially engrafted!  

Not one Dr can explain how Deryn fought off THREE catastrophic infections with NO immune system and then went on to engraft with what recent tests said was empty bone marrow!

On February 25th 2014, Deryn had his line removed from his chest and was officially 'Off treatment"

Deryn wanted to set up a charity that would benefit teenagers who have had and who are still being treated for cancer. 

In December 2014 DoEveRYthiNg became registered with HMRC and the charity work could begin. 

Thank you so much for visiting Deryn's page and for reading his wonderful story. 

** Miracles do happen and dreams can come true **

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