Preparing for childcare, preschool and school
A day in the life of Ruby
Ruby, MSUD, age 8
What is your daily routine?
Get up, have breakfast normally coco pops, make coolers, drink one, brush teeth, brush hair put shoes on and go to school. Come home from school, have cooler and get changed, play outside, feed the dog. When mum gets home I have dinner, have a bath, last cooler and go to bed.
How do you explain MSUD?
Maple Syrup Urine disease. When I was sick as a baby you could smell maple syrup in my ears. I have a special diet I can’t eat much protein, if I have too much I can get really sick and go to hospital to stay overnight.
What is your treatment?
I count protein and if I don’t know how much is in it I ask mum and dad. I have coolers 3 times a day with valine.
How did you go about educating the school/ teacher/classmates about MSUD?
My friend Ella knows and my teacher knows, but no one else at school. Why don’t you tell everyone? Because it’s embarrassing.
Any major difficulties (what is hard at school)?
It’s hard to tell everyone I have MSUD.
Anything else? LEVEL 15 of blitz master
Favourite food, snack?
Ice cream, chocolate, cream filled biscuits. Broccoli, corn fritters and hash browns.
What would you like everyone to know about growing up with MSUD?
That eating vegetables is probably more healthy than eating meat anyway. It’s a bit different, and it’s hard to ignore all the food I can’t eat.