Luke suffers from life-threatening multiple allergies, and has the worst case of asthma specialists has ever seen. His respiratory health is so poor that at any moment he could go into anaphylactic shock or suffer a fatal asthma attack. As a result, Luke had already spent more than a year of his life critically ill in hospital by the age of five.
To help children like Luke, the team here at Starlight need to raise much needed funds this Christmas. This is to ensure Captain Starlight is there to fill our Starlight Express Rooms with magic and fun, and to bring laughter into the rooms of bedridden children with games, quizzes and Starlight TV.
The worst year so far was 2007. Luke spent 198 days in hospital. I counted every one of them. I had to say goodnight to my little boy night after night that year, and it was just unbearable to leave him there in his oxygen mask in order to go home to his brother and sister.
And that’s the thing – Luke is only one of my three children. I try to be there for them too whenever I can, but it’s so difficult. I realised just how much the other children are impacted when I was out shopping with Luke’s brother Joel recently. He turned to me and said “Mummy I wish I was sick, and then I could get more time with you, like Luke”.
In 2007, with hours to go until Christmas Day, Luke was rushed to hospital with severe pneumonia. With her husband working and two other children to look after, Leonie had no choice but to leave Luke among the tangle of drips and ventilator tubes that kept him alive. So on the night Luke should have been tucked into bed, waiting for Santa, he was in hospital alone. I cannot imagine how Luke or Leonie felt on that day. It’s devastating.
Thankfully, Luke was well enough to celebrate Christmas at home last year. But Leonie told me that Luke’s asthma has been particularly severe lately, and she is deeply concerned that once again he may end up spending the festive season on a children’s ward.
I hoped that Captain Starlight might be able to visit during Luke’s Christmas time in hospital. And like magic, one morning, a Captain was at Luke’s door and you could just see the happiness flood back into him.
Captain Starlight never lets anything get in the way of cheering up Luke, no matter how sick he is. In the past, when Luke was at great risk of catching an infection, Captains have even donned surgical gowns, gloves and face masks in order to spend time with him. Happily, on this occasion, there was no need for all that. Luke was allowed to get out of bed and play with Captain Starlight face to face.
Captain Starlight brought him presents and did tricks with him. They spent quite a bit of time together that week. And Luke was ecstatic. Captain Starlight didn’t talk about his illness, but concentrated on making him happy. Captain Starlight was the only person that came through his door bringing fun rather than more pain – and that just meant more than I can say.”
It takes a lot of skill, training and experience for Captain Starlight to make children like Luke smile at any time of year. But Christmas time brings even greater challenges. The fact is, not only are boys and girls more likely to be desperately homesick at this time of year, those who need help to keep their spirits up are likely to be the sickest children of all.
Each year there are over 600,000 child admissions to hospitals in Australia. Our hope for the New Year is that we will be able to find the money to touch the lives of every child who needs our help, and not just the one in three we are able to reach today.
But our first challenge is keeping our Starlight Express Rooms and our bedside visits going over the Christmas period – and ensuring the financial challenges we currently face do not impact on the lives of the children like Luke, who depend on Captain Starlight to make necessary hospital stays so much happier.
