Abbi is one in a million
7 August 2012Gary and Sarah Bennett, whose daughter, Abbi, has Ullrich congenital muscular dystrophy, started a fundraising committee which they called Abbi's campaign - one in a million. The name refers to their beautiful daughter and the rare nature of the genetic condition she has which affects only one in every one million babies born.
Abbi is one of four daughters. She was born in February 2008. Everything seemed fine at first and Gary was overjoyed in becoming a dad for the first time. However, when Abbi was a few months old she wasn't gaining weight as she should and by six months she wasn't crawling or pulling herself up as other babies do. Doctors were unable to tell them what was wrong and she was referred to the Birmingham Children's Hospital. After various tests and a biopsy, in April 2011 Abbi was diagnosed with Ullrich congenital muscular dystrophy.
"We were in total shock, mainly because nobody could really tell us about the condition or what we could expect for the future. Over the last two years, more information has become available and we know more about what we are dealing with, which makes it a little easier for us and for Abbi to accept and understand," said Gary.
While Abbi can walk, she cannot run or jump and she struggles to get up from a seated position. But she is an intelligent and very determined little girl, who sees the best in life and in people, and copes with her condition in a way that is constantly commended by her peers and family alike. It was Abbi who inspired the people around her to fundraise for the charity.
Abbi is a beautiful, happy, intelligent young lady who loves to sing. She continues to inspire us everyday."
Because so many people were fundraising in support of Abbi, Gary and Sarah decided to start their own fundraising committee to support the charity. They keep their supporters updated about what they are doing, where their money is going and what Abbi has been up to on their Facebook page and Twitter, which also helps them to raise awareness of muscular dystrophy and the impact it has on families in the UK and indeed the rest of the world.
"Our main supporters at the moment are family, friends and work colleagues, all of whom have shown us a kind of generosity that we could only dream of."
Gary skydived, along with friend Lauren Ainge, for Team 100 in the Make today count fundraising initiative and dived with sharks at the Blue Planet Aquarium in Chester with Daniel Bacon. One of their major fundraisers, Liam Barnes, is doing four runs for them and another, John Darby, has organised a quiz night.
With the help of Sarah's mum, who has a photography business, the committee produced their own version of a Calendar Girls' calendar for 2012. The committee is also organising a race night to thank all their supporters and are looking for the next exciting challenge to take on.
Our mission is to raise awareness of the range of muscular dystrophies (of which there are 60) and to work alongside the muscular dystrophy campaign to raise funds which are so vital for the research and development of potential treatments for the future. Without the Muscular Dystrophy Campaign, the recent breakthrough of exon skipping in boys with Duchenne Muscular Dystrophy would not have been possible."
The Muscular Dystrophy Campaign has been supporting families affected by Ullrich’s congenital muscular dystrophy since 1959 funding research to find a treatment for this condition. The Muscular Dystrophy Campaign has funded a Clinical Research Fellow and Clinical Trials Co-ordinator at the Institute of Child Health in London, both of whom have been instrumental in allowing Great Ormond Street Hospital's participation in the upcoming trial of Omigapil for Ullrich’s congenital muscular dystrophy. With your help we can continue to fund research which could improve the lives of individuals living with this condition.
Follow Abbi's campaign - one in a million on Facebook.
Abbi's campaign - one in a million is supported by their local Muscular Dystrophy Campaign Volunteer Fundraising Manager, who helps them with ideas, resources, and plenty of encouragement to keep up the good work. If you would like to help us like Gary and Sarah please contact us and we will be able to provide any guidance and support you might need volunteerfundraising@muscular-dystrophy.org
Setting up a family fund, like Abbi's campaign, is a great way to fundraise for the Muscular Dystrophy Campaign. Find out more about our family funds.
Comments (2)
Hi there,
My 22 month old daughter, sophie was diagnosed with ullrich at the beginning of this year. She is unable.to sit unaided, stand, walk, shecn not even lie of her front and lift her head of the floor or push up with her hands.
I would really like to share how our girls lifes are and i hope to hear from you.
Natalie
My daughter Katie also has it. She is six now and can walk a little with splints. She was born with a twisted foot, which we now know was related to her condition. It has been straightened with two operations. She is healthy though weak all over. No breathing difficulties as yet. She is amazingly accepting of everything and always has a smile on her pretty face. I do hope they find a cure.