‘I had tears in my eyes’ – Lulu’s story

‘I had tears in my eyes’ - Lulu’s story
Posted on Fri 10 Jul 2020

Meet Lulani, a recipient of a Telepractice Support Kit.  

You can call her Lulu - everyone has since she was born.  

Lulu just turned 15 in May. She was diagnosed with CP when she was 10 months old. She wasn’t reaching her milestones so her parents, Michelle and Craig, took her to see a few specialists where she was given a diagnosis. Lulu began therapy with Cerebral Palsy Alliance (CPA) almost straightaway.  

She currently sees a speech pathologist, occupational therapist and physio, and she receives support from carers throughout the week.  

Coronavirus hit Lulu and her family hard.  

“It was very difficult. We are a high-risk family. Craig is a truck driver and he has diabetes. He was out of work for three weeks. My mum and my sister have conditions too. Not to mention Lulu with her CP.  

She absolutely loves school and she’s a real social butterfly. It was difficult to explain to her why she wasn’t able to go to school or go out. Her anxiety went through the roof.” - Michelle, Lulu’s mum 

Like lots of Aussie students during the pandemic, Lulu had Zoom lessons with her teachers. So, her family extended her care worker’s hours to do schoolwork with her. 

When Michelle found out Lulu wouldn’t be able to go to school, she bought craft materials and exercise gear. 

“We tried to take it in our stride and do lots of activities. We set up some fun games for her. Craig is very hands-on, so we hung a ball down on our front porch and hit the ball around”.  

On top of everything, Lulu missed out on vital therapy, and her family struggled to use Telepractice without the right technology.  

“We had a few telehealth calls, but we don’t have phonelines to our house, so we would have to hotspot from our phones to her device. A lot of the time, there was a delay or we’d drop out completely. It was frustrating.”  

One of the biggest impacts was missing appointments with her speech pathologist. Lulu has been using her speech device for 18 months, but missing appointments because of the pandemic has been a huge set back.  

“We’ve had to go back to basics and start again. She was moving forward and doing really well with the speech device, but her progress was put on hold for three months. It was emotional watching her anxiety increase. It’s taken a toll on all of us, but we didn’t have a choice. You just have to muddle through however you can.”  

 Michelle describes the moment she found out Lulu would receive a Telepractice Support Kit:  

“When I got the phone call from CPA at Croudace Bay, I just burst into tears. I’d had a hard day because Lulu’s school had decided not to go back full-time, and I felt deflated knowing she loves school so much. The phone call couldn’t have come at a better time.” 

Lulu received a Samsung Galaxy S6 Tablet, protective case, Google Play Card, and a data card equating to 100 hours of therapy.

“When she opened the Kit, I had tears in my eyes. Seeing her happy, seeing her smile like that, made a lot of what we’d gone through disappear. For a while, it took her anxiety away. It was just lovely.”  

The Support Kit has made life much easier for Lulu and her family, and made a huge difference to her therapists. Now she can have her appointments without dropping out. Plus, Lulu loves playing on the ABC Reading Eggs app on her tablet.  

“It is so hard to put into words how grateful we are to everyone who helped provide Lulu’s Support Kit. Thank you from the bottom of our hearts. You’ve really helped her connect with her therapists. The smile you’ve put on her face is priceless. I can never thank you enough. What you’ve done is amazing.”  

CPA would like to say a massive thank you to all donors and corporate partners, who together raised $1.2 million towards our Emergency Telepractice Appeal to help families just like Lulu’s.  

If you would like to send a message to Lulu, email charlotte.regan@cerebralpalsy.org.au

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