I’ve never done any fundraising before, so reaching our goal so quickly is awesome and I couldn’t of done it without my family and friends (new & old). The Run4Fun isn’t until November 4, so we still have heaps of time to raise more awareness through October (Rett Syndrome Awareness month) and to maybe raise a little bit more over our goal 🙂
We’ve been busy little bees over here – we had the fantastic opportunity to be in our local paper! A couple of weeks ago I sent an email to the Rouse Hill Times about teamjovie.com – the next day I did a phone interview & the day after that their photographer came out to see us! Here were are on the website’s front page –
I also made a bunch of Rett Syndrome awareness cards via moo.com and they arrived yesterday –
I loved the Purple cards but wanted to use my own Jovie photos and design to tie in with our Team Jovie website. It’s been something I wanted to make so I can hand out a little bit of info to friends and strangers whenever they ask me about Jovie (even some dr’s haven’t heard of it before.. yikes). The back has more info about RS but the front is all Jovie!
It’s been a huge deal for me to reach out and do these things because I still have the tendency to just go hide somewhere when I start a new project. I’m still working on it, but I’m very proud to have done what I can, so far.
It was last January (2011) when I was in the middle of my busy working day, when a segment on The View came on television. (Yes, I worked with the tv on. No, it didn’t distract me 99% of the time!). A gorgeous little girl and her loving parents were on to discuss a condition called Rett Syndrome. At this time, we had not begun any sort of investigation into why Jovie was ‘behind’ and had never heard of Rett Syndrome before. The Gutierrez family and Anna had me transfixed and what they were saying set off alarms in me.
Here is that segment –
Yesterday, Anna Gutierrez passed away. She was 4 years old.
I am FOREVER grateful for the Gutierrez family, for Anna and for The View for spreading the awareness of Rett Syndrome. Without that 10 minute segment, I would not have looked into it myself and would of been in the dark about this condition for months and months. I wouldn’t of had the balls to bring it up in our first paediatrician’s appointment, and wouldn’t have the guts to face reality so early on in our journey.
Many girls will pass away from Rett Syndrome and it never gets any easier.
To say we need to find a cure is a given, and I’m hopeful that they will find a cure. In the meantime, I will carry the Rett Syndrome Awareness torch for as long as I can, and hope that these girls are never forgotten.
Jovie doesn’t laugh alot – smile, yes – but there’s not alot of laughter out of her, and certainly not alot of ‘play’ and joint play.
Tonight was an exception …
She was very giggly throughout dinner and it continued while I was washing up so I whipped out my phone and filmed a bit.
I can’t tell you how nice it is to see her interact this way, she doesn’t play because she doesn’t know how. But this? She can do it seems. And I love it.
