A mum-of-five who receives respite care from Demelza House has shared her story to raise awareness of the charity ahead of Children’s Hospice Week on May 23 to 29.
As a mum of five, Amy Miles expected to have her hands full, but when her youngest – twins Kendall and Junior – were born prematurely in 2011, her life became a frantic juggling act.
Amy was only 24 weeks pregnant when she went into early labour. Her babies had to fight for life for months – Junior suffered a bleed on the brain and Kendall needed heart surgery. She said both her babies suffered every infection possible.
With the twins often needing specialist care in different hospitals in Brighton and Southampton, the family had to shuttle between there and their home in Eastbourne until Junior was discharged at seven months and Kendall was allowed home exactly one month before their first birthday.
Then, aged two, Kendall went down with respiratory illness RSV, bronchitis and pneumonia on the same day. The little girl was rushed to Evelina London Children’s Hospital where she was on life support for six weeks and then had to stay on the ward for nine months, eventually needing a tracheostomy to allow her to breathe more easily.
Amy had to learn all about her daughter’s medical needs before she could care for her at home.
She said, “There was a huge amount to understand.
“But then my care worker told me about Demelza Community and wrote a letter of referral.”
Amy started out by going to a local music therapy group arranged by Demelza and now has a regular break when one of the Demelza community care team comes round to take on Kendall’s care.
She said, “At first I stayed at home catching up on the housework because I never left her with anyone except my mum, but I’m confident enough to go out now.
“Before I didn’t have enough time for the other kids but now we can go out shopping, or I’ll take Junior swimming.
“It’s nice for Kendall too – having spent so much time in hospital she’s cautious around people but she loves playing with the Demelza nurses and calls it a play date.”
After her rocky start, the future is looking brighter for Kendall with hopes that soon she will no longer need the tracheostomy, but in the meantime Demelza is there for the whole family.
To find out more about Demelza and the work it does within the community visit www.demelza.org.uk/about-us/demelza-community-in-east-sussex.
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