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Amanda Herry

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We're taking part in RBC Race for the Kids as a family - please help us raise as much as we can

Amanda Herry

Running for Bella, to raise awareness of non-LCH and to fundraise for the greatest charity!

I am running for Bella! HELP!

As many of you will already know from the day we welcomed Isabella into the world, breathed in that beautiful new baby scent and kissed those chunky toes (chocolate toes Cherry says- not because they're brown but she assures us they do in fact smell like really good chocolate?!-sister love) we noticed a few small lumps on the side of her head and were simultaneously informed she had an unrelated heart murmur.

The pediatric doctors reassured us RE the murmur, which did resolve however they were bemused by the lumps and asked us to monitor. It wasn't the news we were expecting but we had everything we wanted; our family was complete and a few small spots weren't going to get in our way. 

THE BAD NEWS- a few small spots turned to 5, which turned to 11, which grew larger and scaled over and as the weeks and months passed every consultant we saw said they had never seen this before they would call in colleagues for second opinions and ultimately would have to refer us on; and with every visit my heart sank - i just really wanted to hear "oh yes, we see this all the time". 

THE GOOD NEWS- We were ultimately referred on the Great Ormond Street Hospital who decided it was time to do a biopsy and investigate further. Its not an easy thing to take your baby to be put to sleep to have a procedure, but we couldn't have been supported better. The staff and volunteers at GOSH handled us all with the upmost compassion in our most emotionally fragile states and i couldn't be more grateful. 

After what felt like a lifetime of waiting we were informed that Bella has something called class 2a non-langerhans cell hystocytosis (jeuvenille xanthogranuloma), which in short means that she has a benign tumour with only the slightest chance of developing into cancer and in fact most times the disease resolves on its own! We are on a cycle of scans and xrays to monitor her internal organs as the tumours can develop elsewhere and will be under the care of GOSH for the next 7years.

THE SAD NEWS- every time I pass the road where I took the call to let me know the tumour was benign my heart skips a beat and I feel teary because I feel so blessed that we got the news we did and so sad that lots of the families we met along our journey didn't receive the same and they will have continued their journeys down a very different path and I can't think of anything worse than watching your child suffer or be ill and feel helpless. 

THE BIG NEWS- I am by no means fit so whilst this may seem a small challenge it feels like a big one to me- I am going to jog the 5k Race for kids and hope that you can join me in raising some money for a wonderful charity that tries to bring love, laughter and brightness to support kids and their families in the toughest times. 

I'm jogging for a place that provides a play area for the siblings of sick children who spend days to weeks at a time in hospital; that provides a place for mum and dad to stay when they cant be with their child but they can feel as close to them as possible; I'm jogging for a place that understands the impact of illness on the whole family and supports them.

I hope that you and your loved ones will never have to use their services, but this is a place we want to THRIVE so any help you can offer would be incredible. THANK YOU!!

Please Help Me
Reach My Goal

Raised

£1,876 + £275.57 GiftAid

My Goal

£2,000

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Thank you to my Sponsors

£200

Anonymous

£150

Joshua Herry

£127.20

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£100

Madhu Paramanathan

£100

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£100

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£53

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£43

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£42.40

Emma Lawrence

£42.40

Jeremy Herry

£42.40

Matthew Herry

£40

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£15

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