Sick Kids Awards: Nomination for brave Anna

MOTHER Alison Pentony had just left her daughter playing away happily at the Sick Kids hospital when she received the most shocking news of her life – that her child had less than 24 hours to live.

Anna, from Davidson’s Mains, had been diagnosed at birth with spina bifida, which left her paralysed from the waist down. However, the fresh diagnosis when Anna was three – which found that severe neurological trauma to her brain stem was stopping nerve signals telling her body to breathe – came out of the blue.

Mrs Pentony said: “They were concerned about her breathing. She had an MRI scan. They actually sat us down and said she was dying and that she wouldn’t last the night. She didn’t look like she was unwell, but they told us that she wasn’t going to make it. ‘We can try an emergency operation on her brain stem, but it might not work’, they said.”

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Doctors went ahead with the operation, which fortunately saved Anna’s life, but left her needing to wear breathing apparatus every night to stay alive.

Now ten, Anna’s outgoing nature despite her physical setbacks has led to her being nominated for the Sick Kids Heroes awards in the “patient who has filled us with admiration” category. Her condition, known as congenital central hypoventilation syndrome [CCHS], requires her to sleep with a ventilator at night.

Mrs Pentony said: “Her brain kind of forgets to send the signal to breathe when she’s sleeping, but she’s fine when she’s awake.

“Anna’s consultant initially was worried that she would die in her sleep, or if she didn’t she would become severely brain damaged.

“Anna doesn’t have any problems with learning. She goes to a mainstream school and she’s a bright cookie. We wanted to make sure she stayed that way.”

The rare disease is not the full extent of the hurdles Anna has had to overcome. She also suffers from scoliosis, which has left her spine severely curved, and a condition known as chiari malformation in which part of the back of her brain has shifted downwards through the bottom of her skull. Despite this, Anna attends drama classes and the Girl Guides.

The Heroes awards have been launched to mark the 20th anniversary of the Sick Kids Friends Foundation, recognising the outstanding contributions made by staff and supporters, and the courage of patients. Nominations must be submitted by April 12 at www.edinburghsickkids.org/events/nominate, by phoning 0131-668 4949.

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