Spotlight on Hertfordshire’s children’s hospice: ‘Good days, bad days, but they make our lives easier’

Keech Hospice Care Brave Herts campaign

Keech Hospice Care Brave Herts campaign - Credit: Archant

To highlight Keech Hospice Care’s Brave Herts campaign, a mum tells why the service is so crucial to her family

Amber Abbott and mum Lee

Amber Abbott and mum Lee - Credit: Archant

Keech Hospice Care aims to raise £2 million through its Brave Herts campaign to support families of more than 450 seriously ill children – at the moment they can only help one third of that number.

The campaign aims make sure hospice care can reach every single child in Hertfordshire who needs it, and that their families are properly supported.

The money raised will help pay for more nurses and community support for people like Lee Abbott from Hitchin and her daughter Amber.

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‘My husband John and I were so excited to be growing our family. Throughout the pregnancy and birth there were no complications and we were thrilled when Amber was born – a little sister for Noah, now aged five.

It wasn’t until Amber had difficultly breastfeeding that I began to sense something wasn’t quite right.

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My GP told me I shouldn’t worry, but I sensed something was wrong.

Our beautiful little girl spent time at Great Ormond Street Hospital in London having test after test.

At 8.45am on the March 13, 2012, we finally got some answers and our lives changed forever. We were told that our baby girl had lissencephaly.

Lissencephaly, literally smooth brain, is a rare brain formation disorder. Each child is different, but doctors told us that Amber wouldn’t develop beyond the level of a baby aged three to five months.

With modern medication and care, some children live into their teens – but coupled with her epilepsy we know our child is going to have a limited life.

We were referred to Keech through Amber’s doctors. Hearing the word hospice is scary – you associate hospices with death and sadness, neither of which I wanted for Amber.

But I knew it provided services to severely disabled children, and I was amazed at just how much it offered and how it could help the whole family.

At first I was reluctant to take Amber there and was sceptical about the toddler and toys group, but when we arrived at Keech we were blown away. It was completely overwhelming but in a good way.

There were children in wheelchairs and being fed through tubes, and I realised that one day my little girl would be like these children.

That realisation was painful but at the same time I was relieved. It was scary to think I would have to tackle these problems for Amber but I was also grateful to see I wasn’t the only one.

Being able to interact with other families and share experiences and advice is an amazing resource.

I thank God that Keech is there because I feel less isolated. Keech isn’t just about the medical side of Amber’s life, it is about providing a quality of life and giving these children some normality.

Keech has been a great place for us as a whole family. We come in for family swims which both Amber and Noah love.

We are also about to start using the respite care facilities so that we can spend some valuable quality time with Noah. Noah loves his sister to pieces and enjoys coming to Keech, where he is able to play with the other children and siblings. He is also really enjoying music therapy sessions.

Keech has been a great support to us and I know that it is the right place for Amber.

Day to day life is a struggle and you have good and bad days but Keech makes it that little bit easier to handle.

I have the knowledge of what to expect and that I have a network of people able to support me, not only with the medical and physical side but also emotionally. It’s incredible to think that Keech relies upon donations from the local community to stay open and provide this fantastic service.

If I won the lottery tomorrow I would definitely make sure that Keech was around for years to come.’

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