Media/Dubbo siblings with rare inherited disease inspire friends to step up to support other kids in need

Dubbo siblings with rare inherited disease inspire friends to step up to support other kids in need

Jenny and Henry Thompson encourage locals to give back to the organisation that changed their lives

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Jenna (24) and Henry Thompson (17) are now all grown up, but they still value the support they received over the years from Dubbo’s Cerebral Palsy Alliance therapy team.

The siblings have Friedreich’s Ataxia (also called FA or FRDA), a rare inherited disease that causes nervous system damage and movement problems. It is thought to effect one in 50,000 people in Australia and NZ.

Like many young Australians with cerebral palsy and other physical disabilities, Jenna and Henry rely on wheelchairs for mobility and spent many years receiving regular therapy and support services from their local Cerebral Palsy Alliance team.

‘For the last nine years Cerebral Palsy Alliance’s Dubbo team has provided enormous support to our family,’ their mum Michelle Thompson said. ‘We have been able to access services like physiotherapy, occupational therapy and hydro therapy and also get in touch with other families on a similar journey

‘This support really helped Jenna and Henry to become as independent as possible. Both are thriving, with the added bonus of them now both being able to drive. That’s true independence!’

The support the family received from Dubbo’s Cerebral Palsy Alliance team inspired their mum to sign up a team for the month-long activity challenge STEPtember.

Michelle rallied three of her friends to step up and join her in team ‘Snazzi Scrappin’. Like 30,000 other Australians taking part in STEPtember, they are aiming to do 10,000 steps a day from 3-30 September. They have started wearing their pedometers and raising money to help Cerebral Palsy Alliance fund vital therapy, equipment and research.

They have organised a fundraising event for 23 September in Michelle’s scrapbooking and crafts shop, Snazzi Scrappin and Beads. The event is called ‘Step into Snazzi’ and will include morning tea, prizes, make and takes, a raffle and lots of bargains. 20% of all sales will be donated to STEPtember.

STEPtember is not just a great opportunity to raise awareness and give back to Cerebral Palsy Alliance but a chance to also get fit and bring sexy back,’ Michelle joked.  ‘On a serious note, Cerebral Palsy Alliance’s Dubbo team has been  a great support to our family over many years, so we want to give something back to help others in need.’

To support Team ‘Snazzi Scrappin’ on their STEPtember journey go to www.steptember.org.au

Attention editors: The Snazzi Scrappin ladies, and siblings Jenna and Henry are available for interview and photos. Please call Michelle Thompson on 0409224991.

Released on 4 Sep 2014