Mark Ollerenshaw

Willow Rose Fund.

Fundraising for Muscular Dystrophy UK
£6,700
raised of £10,000 target
by 182 supporters
Donations cannot currently be made to this page
Event: Land's End to John O' Groats Cycle Challenge 2014, from 26 August 2014 to 7 September 2014
Muscular Dystrophy UK

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RCN 205395 (England and Wales) - SC039445 (Scotland)
We fund research into muscle-wasting to improve the lives of everyone affected.

Story

The Donations for Willow's Fund will go directly towards Professor Muntoni's Research and Willow Rose's ongoing treatment. 

Willow Rose was born on the 22 of January 2011 at Manchester Royal Children’s Hospital.

We already knew that we were having a girl and her name was already set in our minds.

 

Our Family was complete.

Future hopes and dreams.

 

As time passed, certain things became apparent.

Willow Rose couldn’t sit up without help and showed no sign of being able to hold her head up and was generally very weak.

 

Tests were done and we were given the eventual news that Willow Rose had something called, Congenital Muscular Dystrophy which is a Life Limiting Disease.

 

Our world fell apart.

 

Dr “Google” became our best friend and enemy.

There must be and answer?

There must be a cure?

Someone must have developed a pill that can just make your muscles stronger again, Surely!

 

Sadly, as we now know and have come to accept, this is not the case and the fight to find a cure and treatment goes on.

 

Willow Rose began to suffer with regular chest infections.

Regular week long admissions to The Children’s Hospital became a common theme.

She recently spent nearly 3 weeks in Hospital, some of it on the Intensive Care Unit suffering with Bronchial Pnuemonia.

 

So to assist, she was first given a Nasal NG tube to help her feed.

She now has a little Button Gastrostomy which is directly into her tummy.

 

Chest infections are still a constant concern.

 

Willow Rose is growing up fast and has Broken the Mould, which is a bit of a thing that as parents we want you too push for.

 

Don’t accept what people tell you your child will not be capable of, “Break the Mould”, they will amaze you.

 

Jaclyn (Willow’s Mum) has pushed and pushed for Willow Rose to gain her own independence.

Willow Rose was 18 months old when Jaclyn secured assistance from BIME who very kindly allowed us to see how Willow Rose would cope driving her very own powered wheel chair called the Wizzy Bug.

 

The results were astounding.

Willow Rose gained huge Independence, Confidence, Character and the ability to choose what she wanted to do and where she wanted to go.

 

So please “Break the mould”.

 

Willow Rose now has her very own Koala powered chair.

She is now at Nursery and loves being able to move around and play with her friends.

 

Dr Google is where we found, The Muscular Dystrophy UK.

We have found the information on the website to be of real value and this is where we learnt of Professor Muntoni’s research into Congenital Muscular Dystrophy.

Professor Muntoni is carrying out research into Willows condition which at this stage appears to be an almost unique form on Congenital Muscular Dystrophy, this is due to the fact that the Gene that has caused her condition cannot be identified.

Willow Rose is now at full time main stream school and is loving it.

She is a technical wizard and challenges her Big Brother Nick to Minecraft on a regular basis.

Carrington Rugby Union FC are a huge supporter of Willow Rose and we love each and everyone of them for all the time and effort they put into helping Willow Rose.

 

Thanks for looking at the page and please if you can donate.

 

Thanks for taking the time to visit my JustGiving page.

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About the charity

Muscular Dystrophy UK

Verified by JustGiving

RCN 205395 (England and Wales) - SC039445 (Scotland)
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions.

Donation summary

Total raised
£6,699.39
+ £1,563.42 Gift Aid
Online donations
£6,699.39
Offline donations
£0.00

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