Little Stroke Warriors

Little Stroke Warriors – the year that was! By Kylie and Dee

2018 has been massive for the Little Stroke Warriors Australia (LSW) team. We started off 2018 with an amazing invitation to address the All Staff meeting of the Stroke Foundation – this invitation really set the tone for our year. Standing in front of 70 of the Foundation’s staff members telling them about the journey of paediatric stroke survivors through diagnosis, misdiagnosis, therapy and onto recovery was really eye opening for everyone involved. We aren’t for self-praise or congratulations but to see the look of appreciation on the faces of these 70 people we certainly felt pride for what our community means to so many! 

Onward from the All Staff meeting, Little Stroke Warriors was nominated for a Stroke Foundation Award in the category of “Improving Life After Stroke”. In May we headed to Melbourne for the awards which was exciting for so many reasons but one special one was that Dee and I got to meet each other’s husbands – these guys deserve an award! They put up with us nattering about LSW work, they put so much effort into their daughter’s therapies and they are the rocks that hold us together – this was special. To top this trip off, LSW took out the award and with that Paediatric Stroke took a bigger step into the light.

In July with the help of the Stroke Foundation, Little Stroke Warriors Australia was featured in a 7.30 Report segment on childhood stroke. We were nervous and excited by the prospect of sharing our story on National Television. We welcomed the cameras into our homes and our girls lives and sat back to watch the outcome. The night the segment aired our Facebook page lit up. We had found a new way to reach families that didn’t know we existed. At the same time, we were thrilled to see families take up the call and tell their stories on programs such as 9news and other print media channels. This year’s Stroke Week really focused on our kids and we couldn’t be prouder.

Just when we thought the year couldn’t get any better it was trumped by a call from the Stroke Foundation in September. The Stroke Foundation had committed to helping us achieve one of the most important goals we had when we set out on this journey – to provide a handbook to families at the time of diagnosis which would set out the facts around childhood stroke in plain English. This resource currently doesn’t exist, and it’s so desperately needed.  

On the 9th October, in conjunction with the Stroke Foundation we helped launch the Our Family’s Stroke Journey Project at ‘Cranlana’ the beautiful family home of the Stroke Foundation Patron Lady Southey.  It was with passion, pride and nerves that we stood in front of the room of over 50 major donors and told our story - the Little Stroke Warrior’s story and shared why this resource is so desperately needed for families. The reception from the guests and the Stroke Foundation’s donors has been amazing! We are happy to say that a commitment to fund the Our Family’s Stroke Journey Project has been reached with the Stroke Foundation. This means that the first Australian guide to childhood stroke will be available by the end of 2019 to send to families. 

At the start of the year our closed support community totalled 131 people - at the end of November we are some 257 strong. This doesn’t sound like much but when you consider there are some 300 new diagnosis every year then we are making brilliant progress in reaching these families. In terms of our public page which is designed to communicate information, achievements etc to a wider public, we started the year with 130 followers, at the end of November we have some 415 followers. 

The next step for us is to broaden our support base with some extra hands on deck to help with providing feedback on research, media liaison and assistance with Social Media reach. If 2018 is anything to go by 2019 is going to be huge!! 

Thank you for the support you have given us – it means the world to our Little Stroke Warriors Australia families.