Little Stroke Warriors

June 29, 2020

Smashing goals and setting new targets! 

It’s been 18 months since the last update from us here at Little Stroke Warriors Australia (LSW) and I think it’s fair to say that we have squeezed a lot into that time. We have walked, run and traipsed our way through the last year and a half and on our journey, we have been able to deliver some incredible outcomes for our LSW community and for families that are yet to walk our path.  

At the end of 2018, we were thrilled to announce to our community that together with the Stroke Foundation we would be commencing work on “Our Family Stroke Journey”, a family resource aimed to provide parents, carers, family members and friends with a printed document to help guide them through their loved one’s diagnosis, therapies, integration and reintegration into the community. Sadly, for families of children already diagnosed this resource has been lacking in our country and many families have been left to fend for themselves throughout the journey.  

An amazing part of the process to get this resource developed was a series of Parent Forums which gave Dee and I the chance to meet some of our LSW members face to face for the first time. This I can tell you was something very special and will never be forgotten. Our parent forums were hosted by our Childhood Stroke Project Coordinator Katherine David (KD as she is affectionately known) who did a wonderful job facilitating our forums allowing parents to tell their stories, voice their opinions on their child’s treatment and give some insight into what they wished they had of been able to access at the time of their diagnosis.  

Parents that attending the New South Wales childhood stroke forum

These forums were nothing short of emotional but they were pivotal in helping us put together the content for our resource as it was important to both Dee and I and the Stroke Foundation that our LSW community were involved. 

Participants at the childhood stroke forum in Melbourne standing and a line smiling

All work and no play makes for some restless families, so with that in mind, we put our best fundraising feet forward and we committed to a stack of events. Members of our community took on Run Melbourne, the Maitland River Run, countless Park-run events and the Sydney City to Surf which saw Dee and I joined by family, friends and adult stroke survivors to haul our rears from the Sydney CBD to Bondi Beach – 14 Kms of sweat and oh so many proud joyous tears! We raised over $6,000 which will help us provide additional education resources which are outside the scope of the “Our Family Stroke Journey” Project.  

People smiling and hugging at the end of a fun run

In addition to this, we also hosted a 'family funday' in NSW which was supported by fellow Stroke Foundation Ambassador Amber Lawrence. We had a great turnout for this event and added a further $8,000 to the fundraising kitty.  

Anika in her fathers arms

Amongst all this hard work, it’s important to acknowledge the families that we have helped support over the last 18 months. Our community has grown from 257 families to 355 families and our public information page has reached a further 250 people making a total of over 600 people following our journey. Our families have experienced the unimaginable and it’s been quite a heart-breaking experience to watch the journey of these children fighting stroke but throughout it all our families and the warriors themselves have handled whatever is thrown their way with grace and determination. We would like to thank all our families who have helped raise the profile of Childhood Stroke by telling their stories in all manner of media formats. Going public with something so deeply personal is one of the hardest things you can ever do, but it really does make such a difference to other families and to getting our message out! Our families are nothing short of incredible and they are the force that keeps Dee and I going! 

Toward the end of 2019, we collaborated with the Stroke Foundation and Assoc. Professor Mark Mackay from the Royal Children’s Hospital as consumer representatives to submit a funding request to the Federal Governments Medical Research Future Fund. This grant was to enable access to time critical treatments to children who suffer stroke which are currently available to adult stroke patients but are, due to a lack of education and access to specialist neurologists, unavailable to our children. A huge amount of work went into this submission and we would like to thank A/Professor Mark Mackay and his team as well as Stroke Foundation's CEO Sharon McGowan and Peta James for being the driving force behind this submission. This world first study will be life changing not only for Australian babies and kids but for children around the world. Australia will be at the forefront of some really incredible work and Little Stroke Warriors is incredibly proud to be part of this project.  

As we drew a curtain on 2019, we had so many exciting things to look forward to – the launch of our much anticipated resource and we were also holding our breaths for some news on the research grant. With all this on our minds it came as a really wonderful surprise in early 2020 to be nominated for the 'President's Achievement' award at the annual Stroke Foundation awards. Winning the 'Improving Life after Stroke' category in 2018 was a real pivot point for LSW – so this new nomination was really something else. The thing about being nominated in such a prestigious category is being nominated alongside some incredible change makers. We happily took back seat to Assoc. Professor Tim Kleinig who is the head of Neurology at the Royal Adelaide Hospital – Congratulations Tim! We really felt incredibly honoured to have been considered for this award.  

We were also very pleased to be part of Lee Carseldine's Towel Challenge campaign. Lee tragically lost his mother to a stroke and set out to raise $77,000 for the Stroke Foundation. Because of Lee and David Genat's exposure to the childhood stroke cause, our community increased rapidly and awareness about stroke in children grew. We thank Lee and Dave for including us in the campaign. 

Tawhai and Emma and Dee in white towels

February saw the whole world turned on its head by the COVID-19 pandemic. No one saw this coming and before we knew what was happening we were locked down in our homes and unfortunately this caused a delay to the launch of our resource. Despite the ongoing impacts of COVID-19, with the dedication and hard work of Jude Czerenkowski and her team' work has progressed on the resource and other goals thanks to our new favourite app Zoom! We have continued to meet with the Stroke Foundation and participate in events remotely. This just affirms to us that the work at the Stroke Foundation never stops, this amazing organisation continue to advocate and plan for our cause and for that we are so grateful.  

More recently LSW was asked to sit on a webinar panel for the Stroke Foundation's major donors to answer questions about our resource and about research funding needs. This was a huge privilege and we thank the 40-odd attendees for listening to our story, asking some really interesting questions and for hopefully taking away some information that will become a discussion point with other interested people.  

In June 2020, we were just weeks away from the launch of the resource our families so desperately need. We are so excited that the booklet will be available in hospitals and online very shortly! 

Just when we were starting to think about the “what next” came the call we had been waiting for – Federal Minister for Health Greg Hunt had reviewed our submission for funding under the MRFF and agreed that it wasn’t good enough that 600 Australian kids a year aren’t getting the treatments they need due to diagnosis delays. And so on the 20th June 2020 the Stroke Foundation was awarded $4million to fund the Paediatric Acute Code Stroke study. WOWSERS!!!! We still can’t believe that this is happening. Work on this project will be commencing shortly and A/Professor Mark Mackay will lead this research in partnership with the Stroke Foundation. As we said earlier, this research has the ability to change the lives of not only Australian children but also children around the world.  

Three years ago, when we founded Little Stroke Warriors, we had the very ambitious goal of finding just one other family and hopefully making their journey just that little bit easier. The release of our resource and now this amazing grant means that we can most certainly tick this goal off the list. 

So where to from here? It’s a question that we have been asking ourselves of late. There are so many more things that we would like to achieve for our Warriors. We want the Education Department to get a better understanding of the issues children recovering from stroke face. We want to ensure that every child has equal opportunity to access early intervention services without having to wait for funding through the NDIS (this process can take months and months and wastes valuable rehabilitation time) and we want to make sure that families faced with a stroke diagnosis have access to mental health services. Way too many of our families report significant impacts on their mental health whilst navigating their child’s diagnosis and treatments.  

We think it’s fair to say that the achievements over the last three years have been amazing, but we won’t rest on our laurels. Whilst there are kids and families to be helped and supported, we will be there right beside them encouraging them to Be Fierce, Be Brave, Be Mighty!  

Dee and Kylie hugging and smiling

Until next time! 

Kylie and Dee 
Little Stroke Warriors Australia

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