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Emma Smale and family
Emma is taking part in the London Marathon in support of CHSW
Why fundraising for CHSW is so important to Emma and her family

Emma, 33 from Bideford in Devon, is taking part in the 2018 London Marathon for Children's Hospice South West (CHSW) in memory of her eldest daughter, Imogen. Here, she says in her own words why taking part in the marathon and fundraising for CHSW is so important.

“Imogen was born on 12th July 2011 after a very worrying and anxious pregnancy. We were told that she would have a condition called microcephaly (which basically means she would have a small micro, head - cephaly) but other than this we were uncertain as to what future lay ahead for her.

She was our first child, a much longed for baby and really was the most beautiful, loving and courageous little girl we could have ever hoped for. Devastatingly for us as parents we were told by the time that she was 6 months old that she would have a 'limited life expectancy'. We had spent the majority of these first 6 months in hospital and she was already diagnosed blind, she had polymorphic epilepsy, no swallow ability (she had to be tube fed) and was described as globally developmentally delayed. I remember feeling completely heartbroken, unbelievably scared and so worried about how we were going to cope. Imogen needed around the clock care, a multitude of medications, physiotherapy and her condition meant that she only ever slept for short periods at a time which was exhausting.

I had no medical or care background and had no idea how I was going to look after her properly as well as do all of the 'fun, mummy stuff'. I didn't know where to turn or who to ask for help. We were referred to Little Bridge House (LBH) in March 2012 by the community nursing team after a lot of deliberating from us. We were worried that if we agreed to be referred to the hospice it meant that we were 'giving up' and accepting that our baby girl was going to die; something which terrified us.

Thankfully every image and thought I had as to what the children's hospice would be like was completely wrong. It was not clinical, formal and depressing but in fact vibrant, happy, and I instantly felt safe and like we finally belonged. As parents we were able to enjoy some much needed sleep and felt so confident and happy in the fact that our precious little girl was not only medically having the highest quality of care but also the most amount of fun she possibly could.

Imogen loved every single second of our respite stays. Her little face lit up the minute we pulled up it really was her favourite place to be. During the years that followed, Imogen started to deteriorate and spent more time needing admissions to hospital. I turned to the hospice for advice and support and without them I just don't know how we would have been able to keep going. Sadly on March 12th 2016 our beautiful Imogen passed away. I was completely broken and lost but yet again we were helped, guided and supported thanks to the staff at LBH.

Imogen was laid to rest for 5 days in the hospice so that we could be near her and say our goodbyes in the place we knew she loved the most in the world. We literally cannot ever thank the hospice not only for what they did for Imogen but also what they did for us as a whole family. I genuinely mean it when I say we felt they saved us, picking us up whenever we felt we couldn't break the fall. Imogen could never speak but her eyes could say a thousand words and one look into her eyes when she was in the hospice told us all we ever wanted to hear.

Running the marathon is going to be tough but I just really need to do this to raise as much money as I can in Imogen's memory. I know she will be there supporting me every step of the way.”

You can sponsor Emma at: https://uk.virginmoneygiving.com/EmmaSmale1