Tracey Morgan, 48, Bathurst, NSW
Picking up the phone, I was surprised to hear the woman on the other end explain she was from my daughter Gabrielle's school. 'What's wrong?' I asked, fearful Gabrielle, eight, may have been taken ill.
'We caught your daughter going through the bins,' said the teacher. 'She said she was still hungry after lunch and was looking for food.'
My cheeks flushed with embarrassment and I knew I had to explain. 'Gabrielle was sent to school with a substantial lunch,' I said. 'It's not that she's being neglected. She's just not very well.'
It was the same old story I had explained time and time again. 'It won't happen again,' I promised reluctantly.
A few nights later I was watching TV with my husband Peter, 50, when Gabrielle came in looking sheepish.
'What's up hon?' Peter asked.
'I drank the salad dressing,' she replied, knowing she'd done something bad.
I leapt out of my chair and ran into the kitchen to check the fridge. Sure enough, the creamy salad-dressing bottle was sitting in the door, empty.
'Oh Gabrielle,' I sighed. 'That was a really silly thing to do. You know you should come to me if you're hungry.'
The problem is, Gabrielle is always hungry.
What is Gabrielle's condition?
Prader-Willi syndrome is a congenital disease, triggered by a missing gene, that causes obesity, decreased muscle tone and reduced mental capacity. Affected children will do almost anything to get food. This results in uncontrollable weight gain and morbid obesity which may lead to lung failure, heart failure and death. It also slows development.
Physical symptoms include floppiness in newborns; irregular areas of skin that look like bands, stripes, or lines; a narrow bifrontal skull; rapid weight gain; skeletal abnormalities of the limbs; slow mental development; and possible knee and hip problems.
She was born with Prader-Willi syndrome. The rare genetic disease means that, among other things, she has low muscle tone, was born with two dislocated hips and always wants to eat. The eating is the main issue. She doesn't ever feel completely full but the slow metabolism she has from the condition means her weight rockets even when she eats a normal amount of food.
In short, she's destined to always be overweight. At eight she weighs 80 kilos and is just 132cm tall. 'Mummy, people laugh at me because I'm big,' Gabrielle has told me in the past. I know she's been bullied and we've had to move her to a new school.
Another problem is that Gabrielle struggles to exercise.
Her low muscle tone and heavy weight means she tires just 100 metres into the walk to school and has to take a rest. 'I can't run like the other kids,' she sighed one day.
I wished I could help her but, aside from the yearly trips to the dietician who checks her food and suggests new ideas, there was nothing I could do.
And sometimes even that appointment was more hindrance than help.
Last year for example the dietician suggested Gabrielle drink a glass of milk each day to try to fill up her tummy.
Every day I put a glass of skimmed milk in front of her and each day she refused it. After a week I swapped the skimmed milk to a low-fat variety. She drank it but within two days she had put on a whopping five kilos.
'I should have known better,' I groaned to Peter.
It had happened before where the smallest change to Gabrielle's diet could lead to huge weight gain in a very short space of time.
It's difficult to explain it to her but when she was about five I sat her down and tried.
'You have a little monster living inside you,' I said, cuddling her. 'It isn't normal to want the amount of food you want. It's the Prader-Willi syndrome which makes you gain weight.'
She enthusiastically decided she'd beat the condition but sadly there is no cure for her.
We hope one day she will be allowed to go on growth hormones which will give her a growth spurt, distributing her weight better. It will also prevent her from putting on any more weight and help her with muscle tone.
The only problem is Gabrielle is too heavy to go on the hormones at the moment. She needs to lose 20 kilos before she can have them and this seems like an impossible target.
'Why do people stare at me?' she asks whenever we walk down the street.
It breaks my heart, and I remember about a year ago in the supermarket something inside me snapped. Some women were watching Gabrielle. 'What are you all looking at?' I shouted, throwing a bag of frozen peas into my trolley. 'She's ill. She can't help it.'
Everyone went silent and scurried to different aisles. That'll teach them, I thought.
But now I try to ignore people who stare and I tell Gabrielle to do the same. 'You are who you are,' I say to her. 'You can't help your weight and it doesn't matter anyway. We love you just the way you are.'
Today, Gabrielle is in a supportive school and we're trying really hard to help her lose that 20 kilos so she can start the growth hormones.
Gabrielle is my little girl whatever her size and with her courage there's always hope.
Do you know someone with a unique condition? Share your thoughts by leaving a comment below. |
