Juliette Newton

Juliette's Parachute Jump page

Fundraising for Cambridge Rare Disease Network
£350
raised of £300 target
by 14 supporters
Donations cannot currently be made to this page
Participants: Helena Baker, Zoe Napier, Emily Mortimer, Lisa, Caroline
We are building a thriving network to support people affected by rare diseases

Story



I'm participating in this jump to support my friend Helena, her story is below. 

Thanks for taking the time to visit my JustGiving page. 

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Helena's Story:

I was born with Fibular Hemimelia, a rare congenital disorder that meant I had one leg shorter than the other, a tiny club foot, lots of missing ligaments in my leg and body and a fierce determination not to let it stop me from doing anything. Well, except hockey :-)

I grew up having more operations than hot dinners, but never had a diagnosis.  Eventually, aged 49 and a half, I was told my diagnosis and the fact that nothing my mum could have done during pregnancy would have changed the outcome.  Having that diagnosis earlier would have made a world of difference to my parents.  

CRDN is aiming to fund specialist nurses to support families, adults and children with rare diseases, from the named disorders to the unknown and un-named.  Having had access to such a support service would have made such a difference to me and my family.   Please help me to help CRDN and ease some of the fear and distress.



About the charity

CRDN is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, we improve the journey towards better diagnosis, treatment and support for rare families.

Donation summary

Total raised
£350.00
Online donations
£350.00
Offline donations
£0.00

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