Children’s hospice launches campaign in St Albans
- Credit: Archant
The devastated family of a sick toddler are among those who will benefit from a vital fundraising campaign launched in St Albans on Thursday.
Keech Hospice Care is aiming to secure over £2 million through their new campaign BraveHerts which hopes to support families of over 400 seriously-ill children like Evie Ryan.
Evie, from St Albans, had just started to walk and talk and turn into a bubbly toddler in April last year when she suddenly became sick and floppy.
Her mum Kim Barron said: “She was like a dead body – she looked straight through me. I felt quite nervous and went to the GP who immediately called an ambulance.”
An MRI scan revealed damage to Evie’s brain and days later she was diagnosed with Glutaric Aciduria type 1 (GA1) and Dystonia, an inherited disorder in which the body is unable to break down completely certain acids and causes muscle cramps.
The diagnosis came as a total shock to Evie’s family, especially her mum, as did the fact that she and Evie’s father carried the faulty gene which gave them a 25 per cent of having a baby with GA1.
Kim explained: “One year on from Evie’s diagnosis it is still difficult to comprehend. When Evie got sick I assumed she would get better. Then I heard the words life-limited.
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“My little girl is never going to get better and is expected to survive for just six more years. How do I process that? She had started to talk – she was saying mummy and daddy.
“I loved to hear those words. Little did I know that I would never hear those words come out of her mouth again. Some days I still feel in total shock. For the first 16 months of Evie’s life there was never any indication that something was wrong.”
A nurse told the family to get in touch with Keech Hospice which Kim said was now a huge part of their life: “I liked it straight from day one. Keech is the only place I feel normal as a mum. I also don’t feel like I am the only mum with a sick child.”
“Living in Hertfordshire it is not always easy to come into the hospice. So it is wonderful that I also get so much support in my own living room, whether that is Mary helping to sort out our care package or talk about housing or benefits or Jenny coming for some specialised play with Evie.”
The money raised through the BraveHerts campaign will enable the hospice to provide seven new community nurses to work in families homes like Kim’s as well as providing 10 healthcare workers to support families through the most difficult times of their lives.
Anyone interested in finding out more should visit the charity’s website at www.keech.org.uk/braveherts.