Lili

Lili is 12 years old.  Like most twelve year old girls, a good day for Lili is hanging out with friends, playing sports, going to school, going to church and being with her family. Lately Lili’s definition of a good day and a bad day has changed.  Lili’s sore throat, though innocent at first, developed into rheumatic fever and damaged her heart.

Lili has been in hospital for three months. Sadly her definition of a good day and a bad day is now very different from most twelve year old girls. She misses her Mum and Dad, her sisters and her room.  She can’t wait to go back to school and worries about all she has missed.

Now Lili looks forward to the day she can walk.  “That will be a really good day,” she says.  But for Lili the very best day ever is when she can go home.

No one in Lili’s family has ever had a heart condition. It’s something Lili and her Mum and Dad and close family find really hard to deal with. “When we got here they did all my tests and we found out that I had a heart condition,” says Lili.  “We didn’t take it well because I was a healthy girl.  I got all my immunizations and everything like that.”

As the days come and go Lili waits.  She waits for her tests to improve and she waits to hear when she will have open heart surgery to fix her heart. On the good days she takes her wheel chair down to the atrium and plays on the swings.  It’s one of her most favourite things to do. She looks forward to her next visitors, the things they will bring and the games they will play.

On the bad days she tries really hard not to think of the bad things, the needles, the days when she doesn’t feel well.  She tries not to feel scared and she tries not to feel different.  “Sometimes it feels scary because you don’t know what’s happening to your body,” says Lili.  “I feel kind of strange because I feel like I am different to kids in lots of ways.”

During one of her visits @Heart’s Hospital Family Support Worker gave Lili’s Mum information about Camp Teen Beat, one of Heart Children’s camps. “Yeah I’m hoping I can go next year. I know there are a lot of people who are like me,” says Lili.  “I can go to all the camps they do and do all the activities and make friends with them.”

When you’re living with childhood heart disease the good days really matter.  Here at Heart Children we’re passionate about providing life long support to heart children, like Lili and their families … through the good days and the bad. Will you help us?  Make today a good day.  Phone 0900 4 HEART for a $20 donation, or donate online now. To find out how else you can help heart children have more good days click here.