Born premature at 24 weeks, Sebastian Claessens had a tough entry into this world.
He spent his first six months in intensive care, had no movement in the left side of his body, and endured heart surgery, blood clots and severe brain damage.
Despite being given only a 5% chance of survival, Sebastian is now a soccer-playing, music-loving, hip-hop-dancing 16-year-old, living with cerebral palsy.
Sebastianโs dad Michael said the doctors had no idea if Sebastian would ever walk, or what sort of life he would be able to have.
โBut now, heโs a happy and engaged kid,โ Michael said. โHeโs gone from zero to hero.โ
In Australia, one in 700 babies is diagnosed with cerebral palsy โ a neurological disorder caused by damage to the brain during pregnancy or soon after birth and which affects a personโs body movement and muscle coordination. However, that is a significant improvement on the incidence rate of 10 years ago which was one in every 400 babies.
Funding for research and service provision comes, in part, from the Cerebral Palsy Allianceโs annual fundraiser, STEPtember.
Now in its tenth year, STEPtember challenges participants to take 10,000 steps a day for 28 days whilst soliciting donations for the cause.
The Cerebral Palsy Alliance (CPA) has worked with the Claessens for the last 13 years, providing ongoing physical support for Sebastian and information and emotional support for the entire family.
Sebastianโs mum Stephanie said the Alliance had helped make it easier for people with cerebral palsy to live their everyday lives and to always be as functional in their bodies as possible.
โAs Sebastian grew, he needed exercise classes and the CPA have excellent, amazing services,โ she said.
โThe hydrotherapy is extremely important because it gives Sebastian a feeling of weightlessness, which he just loves, and he is able to stretch and strengthen his body.
โPeople with cerebral palsy are always fighting the tension in their muscles and working against tightness in their body.
โItโs extremely tiring, just to sit up straight or in a chair means their body is working overtime.
โWe see him forget that his arm doesnโt work properly, or his leg doesnโt work properly, and heโll tire and slump.
โBut with assistance and exercises once a week, he can train and get stronger.โ
Stephanie said while the Alliance was โa fantastic sourceโ of information, it was also a way to connect with other families.
โWe go to events and socialise, and we share information and our experiences,โ she said.
STEPtember is the CPAโs leading fundraiser, with more than 80,000 people around the country taking part.
CPA corporate manager Kristie Steggles said this yearโs STEPtember was even more important because it was their only fundraiser unaffected by COVID restrictions.
โAnyone can do it, itโs not just walking, you can do other things, you can even do housework โ itโs inclusive.
โYou just need to register, log your activity on the app and get people to donate.โ
STEPtember raised more than $7 million last year, and along with mobility equipment and support for individuals, the money also feeds into research, identifying at-risk babies, developing early intervention strategies, and plugging gaps in the National Disability Insurance Scheme.
Kristie said it can take around 18 months for babies to be diagnosed, which meant early therapy in the pre-diagnosis phase was crucial.
โThe research foundation is world-leading,โ Kristie said. โWeโre focused on the treatment, prevention, causes and cures.โ
In the Canberra region, Capital Chemist Group has supported the CPA for 13 years and donated around $150,000 in equipment and $6 million cash.
Capital Chemist community program manager Melita Flynn said the groupโs connection with CPA had been โquite a profoundโ experience.
โWeโre extremely proud, theyโre a wonderful organisation,โ Melita said.
โWe know where the money goes, how itโs assisting, and weโre pleased to give back to our community.
โI donโt think people really know how many people are affected by cerebral palsy.โ
Capital Chemist Group will have around 50 staff participating in STEPtember again this year.
โItโs a great way to get your steps in and we like to have some fun and some competitions,โ Melita said.
โWeโre proud of our community program.โ
Sebastianโs older brother Max will be doing the 10,000 daily steps this year on behalf of the Claessens family, Dad will be using his business to promote it and Mum wants to raise awareness.
Stephanie said cerebral palsy was a โlifetime situationโ which required continual intervention to keep people mentally and physical healthy.
โYou never stop using the therapies,โ she said.
โThere is never a moment you think, โthatโs it, thatโs as good as we can goโ.
โIt took Sebastian six-and-a-half years to be able to walk properly, but we kept working and today weโre in a really good situation.โ
Michael said people with cerebral palsy fought a battle with their body for all their life and the support from not-for-profits like the Cerebral Palsy Alliance was critical for the person with cerebral palsy and their support teams.
โWithout the families and support teams, they canโt get access to the things they need,โ he said.
โThey direct us towards the information we need, they support us and encourage us.โ
