Every moment is precious with Leona
 Because Angela knows her time with her young daughter is limited.
Leona is one of only two children in Britain who have the rare Hallervorden-Spatz disease. Her hands are curved, her speech has become distorted. She can no longer walk and has to be largely fed through a tube into her stomach — although she still manages a few little bits of burger during her McDonald’s adventures.
The condition is named after the two Austrian doctors who discovered it. In the early stages it is often mistaken for cerebral palsy.
Leona was born in Rottenrow Hospital, Glasgow. She was a happy, lively baby and Angela says she “instantly fell in love with her”.
As a two-year-old Leona walked on her tiptoes all the time and when Angela asked the doctor why, he said she was “a classic toe-walker”.
“I still had no idea there was anything wrong with Leona, but as the months went by I became worried about her development. Then I was told by a specialist at Glasgow’s Yorkhill Hospital that she had cerebral palsy.
“She walked with a zimmer for a while, but gradually she lost physical capabilities. Leona is very bright and it was expected that she’d go into mainstream education.”
The breakthrough in diagnosing what was really wrong came with a different neurologist at Yorkhill.
“He took a fresh approach and insisted bone marrow tests, CAT scans and a lumbar puncture be carried out,” says Angela. “Then he broke the news that my daughter was one of only two people in Britain with this genetic condition. There are no cures or treatments and life expectancy is short.
“In June 2000 I was told Leona had Hallervorden-Spatz disease. I’d never heard of it and even the sound of it frightened me. When I realised what the future held for my daughter, I was devastated.
“But I told myself parents lose children suddenly every day in all kinds of accidents. They never get a chance to prepare to let go of the person they love. I decided from that day I was going to make every minute with Leona count.
Happy place
“I was determined our home would be a happy place, filled with laughter and music. She’s a big fan of Gareth Gates.
“She enjoys the company of our dog, Kai. She likes having play-fights with her brother Barney and adores going to the shops for magazines — just like any pre-teen girl.”
The specialist suggested to Angela that special respite care would be available at Rachel House. Leona has now had several visits and loves it.
“I’d always thought no-one knows your child as well as you do,” says Angela, “but within a very short time they seemed to understand my daughter — her needs, her hobbies, what makes her laugh and what she enjoys on TV.
“Leona gets very excited when it’s her turn for a week at Rachel House. She has a favourite on the staff — a care assistant called Peter — but everyone in the hospice is so kind and attentive.
“Rachel House has been a lifeline for Leona. As a single mum it has also helped me enormously to know there is respite care available and that she’ll have such a wonderful time when she’s there.
“Her room is colourful with posters and soft toys, she takes all her favourite CDs, she loves the bright, sunny atmosphere and the company of other teenagers and children.”
Birthday
Later this month Leona will celebrate her 12th birthday with her mum, Barney and her 55-year-old grandpa, John Davidson. He regularly takes Leona out in her wheelchair to the park while Angela is working as a book-keeper at Unicorn Leisure.
With the help of her father and homecare assistants, Angela has managed to hold down her job and bring up her two children. She admits she gets exhausted sometimes, but refuses to feel sorry for herself.
“It’s my nature to look on the bright side and Leona has brought me so much joy. She’s a special little girl.
“Through her, I’ve met many incredible people who do everything they can to make life good for those who are terminally ill.
“The staff at Rachel House have been angels. They have given us a quality of life we hadn’t hoped for.”
Then the little girl smiles back at her mum. And all the fundraising for the new hospice seems more worthwhile than ever.
Meantime, Leona can’t wait for her next midnight adventure at McDonald’s. |
You can e-mail us at:
hospice@sundaypost.com
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With smiles that light up a room, Angela 
