Weʼve raised £0 to Help fund specialist equipment and regular therapy sessions for Winnie, who has a rare neurological brain condition.
- Derby, UK
- Closed on Saturday, 1st December 2018
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Thank you for taking the time to visit my JustGiving page. So, I’ve decided to help raise funds for a little girl who has moved my world over the past year.
Winnie Mitchell-Partridge was born to my closest friend in August 2017. Perfectly formed with ten tiny fingers and ten tiny toes, she was a miracle that had been long awaited by her parents. A few months passed and they noticed that Winnie had developed an involuntary twitch after feeds, which progressively worsened. She was taken into hospital on Friday 20th October 2017 and from that moment on, their lives would never be the same.
ONE IN A MILLION
After various observations, blood tests, an EEG and an MRI scan, Winnie was diagnosed with Pontocerebellar Hypoplasia – PCH. Now I can see the blank looks on your faces and thank goodness there’s an acronym for it.
The term “pontocerebellar” refers to the pons and the cerebellum, which are the brain structures that are most severely affected in many forms of this disorder. The pons is located at the base of the brain in an area called the brainstem, where it transmits signals between the cerebellum and the rest of the brain. The cerebellum, which is located at the back of the brain, normally coordinates movement. The term “hypoplasia” refers to the underdevelopment of these brain regions.
Winnie is developmentally delayed, has impaired vision and also suffers from horrible episodes of dystonia.
I don’t want to dwell too much on the sadness of Winnie's condition as she is such a blessing to so many people. If you would like to know more, please read the unedited version through her mother’s eyes.
It is thought that the chance of having PCH, is as rare as 1 in a million. There is no specific treatment for the condition but various therapies are accessible in order to get Winnie to reach her maximum potential.
The NHS have been fantastic for Winnie and have supplied a specialist highchair and specialist pushchair but any future equipment would need to be self-funded. I am raising money to help with the costs of any necessary equipment or sessions that may help with Winnie’s development, e.g. swimming lessons, specialist seating, physio sessions etc.
My ethos has always been ‘take care of mum whilst mum takes care of Winnie’, but in this case I feel mum is so busy looking after Winnies everyday needs, she doesn’t have much time to spare for fund raising.
Myself along with close family and friends will be doing various fund raising activities over the coming months, including cake sales, Snowdon mountain hike and potentially a benefit concert, just to name a few. I want to keep it relatively simple so as much of the proceeds go into the pot instead of having to pay hefty costs to do the activities, but who knows where this will lead….
I will also be forgoing birthday / Christmas presents in favour of donations to the fund until the target has been achieved.
I just wanted to say a little about Winnie’s parents, Jade and Ellis before I come to a close. They truly are two of the most versatile people I have ever met. The strength and courage they have shown is beyond words and they have never wanted or asked for any charity. They are proud but they need to know its ok to ask for help. So if they won’t ask, I will! Your donations will change this little girl’s quality of life.
I can’t begin to thank you enough for your generosity and look forward to keeping you updated with Winnie’s progress.
Thank you enormously
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