Hi, I’m Sam and this is my daughter Isabella. She’s nine. Isabella was born with a rare neurological condition called Aicardi Syndrome and she was diagnosed at four days old. So when we got Isabella’s diagnosis, it was like our world was turned upside down. You know, we’d gone into hospital to have our second child. We were very excited to complete our little family and after 24 hours we knew things were very bad. And it was really scary because she had a lot of seizures and we were the people at home with her, so it was a huge change for our household.
Isabella was nine in February, so we’re very lucky that we’ve had nine wonderful years. She made her First Communion last May. So we feel quite lucky that it wasn’t this year. We had a fabulous time, huge celebration with lots of family and friends. It was an absolutely fabulous day, just another memory. It’s so important to make so many nice memories and that’s what we’re trying to do.
Alex is her big brother. He is 12. And I suppose he was only three when she was born so he has grown up knowing no different. They have a really lovely bond and he involves her in lots of different games, he makes up games that they can play together or he’ll just sit and cuddle on the couch with her and they’ll watch TV. So to him she is the little sister, you know, she’ll kick out and whack out, whop him one on the head, and he’ll give out to her, and vis versa, so there is a little bit of normality in the relationship as well, which is lovely.
LauraLynn came in like when she was 18 months old, and I suppose at the start we were really nervous like, we’d had help at home but not obviously out of home. So they were able to look after Isabella for Alex’s first few days in the school, which meant that we could really focus on him. And it was just, for us it was really nerve-racking that she was going there but it was such a huge relief when we saw LauraLynn and we just saw that it was really just such a homely place. And it wasn’t clinical it was just somewhere that she was going to able to go and enjoy herself. Like they came in at such a good time for us you know, Alex was at the age that he needed to go off and do things, and for us and they made that possible.
So our daily routine prior to COVID 19 was, Isabella would be awake anytime from four or five in the morning, and we’d get up and we’d start our day and thankfully she got to go to school so she was gone from about half nine to three o’clock every day where I’d get all my bits and pieces done. And then it would be in for homework for her brother, meds, snack for her, getting her changed, washed, meds again, and bedtime and then a little bit of sleep. So we had, that was our Monday to Friday routine anyway so, and then obviously things changed. When COVID-19 arrived initially before schools closed we were obviously being careful with Isabella but as soon as the school shut we basically locked down our home. So we basically stopped anybody coming into the house so it was just the four of us in the house. LauraLynn checked in on us on a regular basis and you know when she came out of hospital they did offer all along any crisis care if families were struggling, if we needed like I said to go in for a break, which we didn’t, we just kept her at home. But I think just knowing that they were all on the end of the phone just made things a little bit easier because you knew you had somebody to call if you were struggling. So definitely yeah, we do live in a community where we know there is a lot of people we can ask for help.