Thank you for visiting my fundraising page.
Our 3 yr old daughter has recently been diagnosed with Niemann Pick C, a rare genetic disorder, the main characteristic of which is neurological decline.
My husband and I have recently launched our "Hope for Hollie" campaign, the main aim of which is to raise awareness of the disease. We hope that by launching this campaign we will be able to raise the profile of the disease and NPDG(UK) and help other children like Hollie who suffer from this disease. Through fundraising activities we also hope to raise substantial funds to help support NPDG(UK) and to assist with research into a treatment/cure for this devastating disease.
In the past year Holllie has began to show signs of mild upper eye movement restriction. We are told this is the very early signs of neurological onset. In light of this Hollie has started on a drug called Zavesca which has recently been licenced in the UK for use in NPC patients. Its by no means a cure but the hope is that this drug may slow the onset of the neurological symptoms for long enough to buy us some desperately needed extra time for scientists to find a better treatment or ultimately a cure.
Our life feels very much like a "ticking timebomb". Hollie is extremely precious to us and is such a lovely happy little girl, it is hard to contemplate her future with NPC.
Please show your support for our campaign and NPDG(UK) by donating through our "Just Giving" page.
The "Amount raised offline" shows the total raised so far from fundraising activities carried out by people/organisations supporting our "Hope for Hollie" Campaign. All money received through these activities has gone directly to NPDG(UK).
We thank you for your support
Helen and Pete Carter
