Thanks for taking the time to visit my JustGiving page.

UPDATE: ASAT 14 Jun 2022

Holly is now 3, she finished her chemotherapy late 2021. The LCH was affecting a vital organ, the liver. She beat it!

However, unfortunately this disease has a high chance of returning and on this occasion it has returned. An MRI revealed a lump in her brain (brain LCH) and her Pituitary Gland is now not working. She is on the strongest form of chemotherapy to defeat the disease and eradicate the lump.

We remain positive and Holly continues to laugh and enjoy life when she can.

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Our beautiful baby, Holly, is 19 months old and has been diagnosed with Multi System Langerhans Cell Histiocytosis (LCH), unfortunately it is affecting a vital organ, the liver. 

Only 50 people in the UK are diagnosed with this disgusting disease and of those 50 only a handful get Liver LCH. LCH is very rare and can be life threatening.

Holly suffered with no diagnosis for many months, until we had enough of the GPs and took her to A&E, they were quick to diagnose her within 2 three weeks began her treatment. Her treatment is a very high dose of steroids daily and chemotherapy weekly. This will continue for upto 12 weeks and then we hope she will be on her continuation medication which will either be 12 months or 24 months of chemotherapy and a lower dose of steroids. Only time will tell if the disease is gone. Like others with LCH, there is a 50% it will come back again. But we remain and will continue to be strong and positive for our daughter who is stronger than we are.

Our life has literally turned on its head. We are living through a parent's worst nightmare and it hurts. Our baby is so brave and is trying so hard to fight it. 

Im sure in the future ill do much more to raise money and awareness of this disease (particularly for GPs who are the first line of detection); but where im needed now is with my family.

I hope my facebook friends, family and colleagues who reads this donate to this page, doesn't matter how small and i know times are difficult right now with COVID, but those than can please give. This money will seriously help research in to the disease and awareness, without it others may go without a diagnosis which can often be too late. Ive started it now because there is no time like the present.