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£20raised of £250 target by 1 supporter

Weʼre raising £250 to Support Brew for Blake - in aid of multiple hereditary exostoses diaphyseal aclasis Lucy Ainlsey Half Marathon September 16th 2018!

Felixstowe Ferry, Felixstowe, UK

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Firstly thank you for taking the time to read – I will try my best to keep this brief.

On September 16th in Ipswich I will be taking part in the Great East half marathon.

I started running this year – well moving a little faster than I normally do I am not sure I can class my light jog as a run.

Now I am the girl who was allergic to any kind of fitness and would make my husband park as close to where ever we were going… How times of changed.

I am not sure I can say I enjoy running, I find it hard but do enjoy seeing what my body can achieve any bullying my mind in to doing more.. I often argue with my own head as my mind wants to stop but my body can keep going.

So in late July my lovely cousin-in-law Shelley Walne tagged me in a post for a space that become available. Love you Shelley (I think) ❤️

This run was sold out. I told myself this is fate… I keep telling myself this is fate and I should try at least.

Now on to the real reason. I am incredibly lucky to be mummy to 3 amazing little boys, Blake aged 12, Ashton aged 9 and Max aged 5. However day to day life for our family is never plain sailing.

Over the last 12 years we have racked up nearly 20 operations and countless hospital appointments. We have visited Ipswich hospital, Addenbrookes, Great Ormond street as well as our regular visits to The Royal hospital for sick children in Edinburgh.

The Royal hospital for sick children in Edinburgh is where we visit to see the multiple hereditary exostoses diaphyseal aclasis specialist.

Multiple hereditary exostoses diaphyseal aclasis affects just 1 in 50,000 people and all three of my children despite having genetic screening.

As a mum I will always struggle with the fact that they have such a rare and debilitating illness and of course feel guilty for the pain and suffering they experience. As a lot of my close friends and family know i have also struggled to deal with this and lots of tears have been shed over the years, but i do really hope with my fundraising efforts and showing them never to give up i can make the boys proud..

Multiple hereditary exostoses diaphyseal aclasis this is a rare chronic disorder characterized by the development of multiple osteocartilaginous masses know as an exostoses. HME can lead to the shortening and bowing of bones; affected individuals also have a short stature. Most recently highlighted in my twelve year old who is struggling with growth.

Depending on their location the exostoses can cause pain and numbness from nerve compression, vascular compromise, inequality of limb length, irritation of tendon. HME has an increased risk of developing a rare form of bone cancer called chondrosarcoma. Problems may be had in later life and these could include weak bones and nerve damage.

Now we as adults often complain of a head ache, colds and tummy aches. My lovely boys suffer daily pain and is often masked by the cheeky nature in them and a smile.

I am so proud of the boys and what they have achieved and continue to achieve.

I am raising funds for Brew for Blake - HME as it’s a charity close to my heart and would be delighted if you can support me however big or small. Also please come along and cheer me on.. Heck I am going to need all the help and support I can get.

Thank you all and lots of love

Lucy xxx

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Lucy Ainsley

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    22 days ago

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    Page last updated on: 7/30/2018 11:28 AM



    • Anonymous


      Jul 30, 2018

      Crazy lady! You go girl!


    Lucy Ainsley

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    About the fundraiser
    Lucy Ainsley

    Lucy Ainsley

    Felixstowe Ferry, Felixstowe, UK

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