I would like to say thank you to all for raising some money and awareness to fight his disease. XIAP- XLP2

DOB 05/11/10   BMT 01/05/14   RIP 30/05/14

Hi this is our son Cameron Clark and he was only 3 years old and needed a Bone Marrow Transplant. 

On October 5th 2013 he was diagnosed with HLH Syndrome secondary to XLP Deficiency (XLP2)... this means his immune system doesn't work properly and he could not fight infections on his own so he needed a new one.

This started out to be a cold and very quickly he got very poorly and rushed to hospital because he caught an EBV infection. To date only 400+ boys have only been diagnosed worldwide with XLP as it was only found in 1998, less is known about my condition (XLP2) which was only discovered in 2008 and to date only 5 cases have ever been recorded at GOSH with his condition so there is still so much to learn to find a cure and help other children.

He was very lucky to be diagnosed as quickly as he was and since October he had 3 long stays at Great Ormond Street Hospital where he had his Bone Marrow Transplant on 1st May 2014. Before then he had to have regular top ups of anti-viral medicines and went through 3 courses of steroids (hence his swelling weight) as well as 15wks of Chemo. This is as well as lots of other medicines to help his immune system work properly until he had his Bone Marrow Transplant, without Delete Blood Cancer we would never of have found my match donor. Unfortunately I do not know much about his match donor apart from he’s from Germany and he’s a 24yr old male but one day we would like to meet him to say thank you for trying to save his life and give so so much. 

The procedure would of meant he would of been still in hospital for around a further 8 weeks after transplant and not be able to leave his room because he wouldn't of had an immune system at all until his new one was re-developed. Then he would of been still be poorly for a further 4/6 months after transplant and in total he would of been in hospital for around a year. 

Unfortunately Cameron Died on the Friday 30/05/14, 29 days post BMT. He faced many battles and won them during his time at GOSH and his bravery showed right through to the end. BMT was working really well but he developed GVHD (Graph- versus- host disease) which resided their battle on his weeker organs and he couldn't win this one even with all the help from everyone at Gosh, His BMT Consultants, and nurses and his ICU teams. His little body just couldn't survive the aggressive cell conflicts from this war. He is loved by so many and everyone knew Cameron as such a lovely boy and hes broken many hearts. Now the staff say, “Only Cameron, that’s Cameron’s way, see how we go.. steady and Slow”

WE Will continue and fight on for Cameron and continue to raise awareness for his condition. There isn’t a charity for his condition so we will trying to start one for the research into XiAP with the help of his Consultants at GOSH, We only ask for your help and register to become a Stem Cell Donor to help other children needing transplants just like Cameron did, as without his donor he might not of even had a fighting chance to beat his condition, XIAP.

A special thank you Mummy (Danielle Clark) and to everyone who has supported us and raised money so far and also for helping support leukaemialymphomaresearch.org.uk and DeleteBloodCancer.org.uk.

Please help other children too by registering to become a bone marrow donor just like our donor did, by requesting a swab kit from DeleteBloodCancer.org.uk You can also donate a little for DBC on our other JustGiving page  www.justgiving.com/DBCCameronsStory 

I ran the KPMG Promenade Relay on 13 June 2014 which is KPMG their Isle of Man’s charity of the year event and we raised collectively over £14K.

Thank you again for your support. 

FB CameronsStory for more information

Together we might find a cure.

Thank you.. DAD

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