If you're not familiar with Ella's Story, here's a link to numerous previous posts about this brave 4 year old's chronic health struggles.
Or for a very long story short, here is a brief description of Ella's main chronic health struggles:
Ella was diagnosed with hemiplegic cerebral palsy in 2008 after suffering a stroke in-utero in 2007. She also suffers from epilepsy, thrombosis, dysphagia, developmental delay, speech processing disorder and Pseudohypoaldosteronism.
While Ella has recovered well after surgery for the gastrostomy, she still needs a very high level of care to keep her little body functioning. And as summer is on the way, she won't be able to play outside much in the sun, as she overheats very easily.
There has been a really great development recently. A few awesome people have gotten together to organise for a new covered backyard to be designed and built in the backyard of the Jakas household, allowing Ella to play outside, rather than being stuck indoors all day.
Lia Healy Photography, Kelly Hody from SaySo Weddings and Andrew & Carin from The Landscaping Ideas & Design Centre have teamed up to help make this dream a reality. Andrew and Carin have offered to donate their time to design and landscape the yard, so only the cost of the materials needs to be covered with donations.
For every wedding booked at a heavily discounted price this month, Lia will donate $100 to the project fund, and $50 for family portrait sessions. SaySo Weddings are also donating $100 for every wedding package and $50 for every family package booked with Lia Healy Photography.
Here's a Facebook page with some more details about how you can help out: https://www.facebook.com/event.php?eid=299887876689696
A post on Lia's blog that helped get the ball rolling: http://www.liahealyblog.com/?p=113
A thread on the SaySo Weddings forum: http://www.sayso.com.au/weddings/forums/t955/
Last Saturday afternoon there was a BBQ lunch at the Jakas family's home, so they could have a proper look at the backyard, and get a clearer idea of what materials would be need to construct a yard suitable for Ella to play in over the summer.
Here is a PDF document detailing the specific materials needed: http://www.sayso.com.au/weddings/pics/TheMissEllaSkyeProject.pdf
If you or someone you know is able to donate time, money or materials to help with the project, it would be very much appreciated by everyone.
Lia is an amazing people photographer, her portrait and wedding images are fantastic, check out her portfolio site: http://www.liahealy.com/#/home/
Here's her blog post with loads of photos from the afternoon: http://www.liahealyblog.com/?p=117
And now for my photos and story from the afternoon...
I arrived a bit after 11am, by myself since Sally was at work for another couple of hours, to find Emily, Ella and Scarlett bouncing on the trampoline together.
They all piled out again after a few minutes, and Scarlett decided she wanted to go up the plastic slide the hard way.
She looked like she was going to fall over at the top, so I put my camera down and brought her safely back to earth. Scarlett always likes looking at cameras, and started pawing at mine on the ground. I showed her where the shutter button was, and after a bit of coaching, she took some photos on her own with the camera on the ground.
So for her first photo credits, here are the details:
Photographer: Scarlett Jakas
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED
I then picked the camera up, and she rattled off some more shots.
Not bad for a one year old hey?
After taking the camera back, Emily brought out a bowl of pasta for Ella, which Scarlett seemed to like the look of, sticking her hand in the bowl to make sure.
Unable to steal any, she tried the handlebars on Ella's special bike instead.
Meanwhile, Daniel (Ella's dad) and Daniel (old friend from school/church) were working on a new antenna and wall mount for their TV.
Andrew and Carin then showed up with a couple of belated birthday presents for Ella, which she was very excited about.
The first present was a doll, and with a big grin she immediately hugged it.
Ella showing Kelly her doll, with Lia photographing on the right.
After everyone had some lunch, the kids were able to run around playing again.
Scarlett was still foraging around for something that wasn't actual food to eat...
...and settled on some purple chalk. Which, judging by her expression, doesn't taste as good as it looks.
While people were milling around chatting, Andrew, Carin and Kelly walked around the backyard, taking notes and measuring to get an idea of what would be needed to construct the planned yard design.
Inside, Daniel x2 were finishing up the TV installation. Ella was quite insistent on watching the Wiggles for a while, despite the fact the TV wasn't actually there.
Lia and I were both taking photos much of the time, and she sat on Ella's lounge to show her some.
After documenting a lot of Ella's life this year, the tables were turned having Lia there photographing me.
Ella was getting a bit overwhelmed with all the heat, noise and people everywhere, so once the TV was securely attached to the wall, she sat down quietly to watch a couple of episodes of Shaun the Sheep.
Since she was quite overtired at this point, Emily took her back to her room for an afternoon nap to recover. Tired out after installing the TV, the Daniels relaxed on the lawn.
Lia posted the photo she's taking in my photo in her blog post. I was suffering from full-frame camera envy after briefly playing with her Canon 5D MkII, and there was some playful shop talk about Canon vs Nikon throughout the afternoon.
Scarlett continued to climb as many things as she could.
She's probably not quite big enough for an effective Godzilla impersonation yet, but it didn't stop her from trying to scare Daniel #2.
Sally arrived after work in the early afternoon, and since we spent more time relaxing and chatting I didn't take many photos for a while.
Later in the afternoon most people had to head off, including Sally and I.
It was really good for everyone to meet each other, and take a big step forward with the project planning. And as mentioned at the start of this post, any contribution you could make, be it large or small, would be fantastic.
If you have a Paypal account, here's a direct link for monetary donations.