Danny's Dandelion Appeal

Raising funds for research into Langerhans cell histiocytosis (LCH)

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Danny is a bright, happy, caring and funny little man. He has an older sister Elizabeth who he loves more than anyone in the world and two doting parents who struggle each and every day to strike a balance between letting him live his life and wrapping him up in cotton wool. Here, they tell his story...

In September 2016, a massive lump appeared on Danny’s neck. To be honest, we had been worried about him for a few months as he had very little appetite, had really bad 'cradle cap', cried every time we shampooed his hair or pulled a t-shirt over his head, and because he just didn’t seem 'right'. We went to the GP and pharmacy and even hospital (after the lump appeared) but the pieces did not fit together until the lump did not go away. An almost throwaway remark about the ‘cradle cap’ obviously turned on a light for the paediatric associate specialist, an x-ray was taken and then life became very different.

After 10 days of testing including MRI, biopsies, neuro examinations, ultrasounds, x-rays and blood test after blood test, Danny was diagnosed with multi system, central nervous system risk, Langerhans cell histiocytosis (LCH) and a year of chemotherapy treatment began. It was an incredibly challenging, scary and disorientating time but we got through it leading to Danny getting the all-clear.

The problem is LCH is a very sneaky disease and unfortunately often returns – which was the case just 10 months later, meaning that treatment began again, only this time much more intense.

Daniel is now following the LCH-IV protocol which is a two-year treatment plan requiring chemotherapy every day. It’s probably no surprise that his school attendance is very low, he gets very tired and often sick, and he is forced to miss out on many of the activities that 7-year-old boys take for granted.

We are really hopeful that the long-term prognosis for Danny is good and that one day ‘all clear’ will mean just that. But like all cancers we know that even if this happens, Danny is very likely to suffer with late effects somewhere down the line and that he will never be truly free from the restraints that LCH puts on him.

LCH is not a well-known cancer by the public and it can be hard to find other families with children who struggle with it. It’s also an unusual disease as it can manifest itself in so many different ways and at so many different levels. But it does exist, children and adults die from it and even if they don’t, it’s often seen as a long-term condition which will forever impact those that are diagnosed with it.

So, we have decided to set up Danny’s Dandelion Appeal to help fund research into LCH.

Why a dandelion?

  • Nickname given by his friends
  • Dandelions, like LCH, can be small but also very troublesome, very difficult to get rid of, and sneaking back
  • Dandelions can be used for wishes – and our wish is to contribute in some small way, to raise awareness and support research to fight back against LCH

Danny – our superstar
Awareness – raising awareness of childhood cancer
Next steps – improving the effectiveness and kindness of treatments
Discovery – hoping to discover new ways to treat LCH and to live with the effects of treatment and the disease
Experience – sharing our experience of LCH, everybody is different, always consult a doctor if you have concerns
Langerhans cell histiocytosis
Investigations – blood and urine tests, x-rays, scans (MRI, CT), biopsy, bone marrow, endoscopy
Oncology specialists treat this disease
Never give up!

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Text CCLG 5 DANNY to 70300 to donate £5. 

CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.

You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Danny's Dandelion Appeal so that your donation is allocated to the correct fund. 

90% of funds raised will go towards research into Langerhans cell histiocytosis (LCH) and 10% of funds raised will support CCLG's work for all childhood cancers.