At KWD we try and be fit and healthy. We really do. Early morning walks, pre-work exercise classes, weekend yoga, diets of every description depending on the season and what’s working best for someone on the team…but in reality life gets in the way much of the time. As a team of 12 women, 11 of whom are mothers, juggling the work/life balance, the guilt of ‘me time’ and the chilly winter temperatures, the best intentions can quite quickly slip away. (We do have one man on our team – but he is a health machine!).
So when an opportunity like Steptember comes around, which provides a tangible way of increasing our movement with achievable goals (increase daily steps from an average of 3,000 to 10,000), we jumped at the chance to get involved. We love team challenges, and by nature we’re an extremely competitive bunch, so KWD now has three teams enrolled in this event. One of the key aspects though, all personal fitness aside, is the cause. KWD also loves a good cause. And this one, well, it’s so important, because it’s raising funds for the most common physical disability in childhood – Cerebral Palsy.
Every step we take, and every dollar we raise, will provide vital equipment, therapy and services to children and adults living with Cerebral Palsy. Or we can choose to raise funds for ground-breaking research into the prevention and maybe even one day a cure for Cerebral Palsy. Wouldn’t that be something?
So get your workplace involved too – Steptember will motivate your employees, unite them and challenge them, and is a great team building activity for organisations large and small.
What is Cerebral Palsy?
It’s a physical disability that affects movement and posture. A permanent, life long condition, it’s the result of damage to the developing brain either during pregnancy or shortly after birth. It affects people in different ways, from body movement, muscle controls and muscle co-ordination to muscle tone, reflex, posture and balance.
This cause is very close to our hearts because it affects a beautiful little boy who lives in Mt Martha.
Rye is a spunky almost seven year old boy who loves a good giggle and really loves Mickey Mouse. Life has thrown him many curve balls and challenges. In July 2011 when Rye was born, it was discovered he suffered a stroke in utero. It was a rough start to life and devastating for his family. Six months later Rye was diagnosed with Cerebral Palsy (affecting one side of his body). The initial prognosis was reasonably positive and all parties believed that he would mostly have difficulties using his right hand and arm. As time went on it was obvious that he was more affected than originally hoped. Rye currently wears two AFO’s (ankle foot orthotics), uses a walking frame, a power wheelchair, a manual wheelchair and lots of other supporting equipment.
At a young age Rye’s ability to speak was questioned, so his family was introduced to the use of Key Word Sign as a speech device. Rye was able to do about 90 signs and it seemed that his cognitive level was almost on par with kids his own age. He understood everything and had his own way of communicating his needs. Until the regression started.
Rye was developing well with his own challenges up until a few years ago, when he started regressing and losing skills. It has been the most challenging thing so far for Rye’s family. The regression started with loss of skill on the speech device, and progressed to not wanting to communicate at all. Today Rye can no longer use any signs or the speech device and he has lost interest in playing with toys or interacting in the way he once did. He has lost some gross motor and fine motor skills and his cognitive skills are now very low. He has an intellectual disability and cognitive impartment and is now at a level of a newborn.
Over the past few years Rye started having issues chewing food and swallowing correctly, and after having a NGT (nasal gastric tube) to supplement his feeds for 12 months he had a PEG (Percutaneous endoscopic gastrostomy) placed and now is fed directly to his stomach. 100% of his nutrition now goes though the PEG with a very small amount of puree for fun.
Watching a child lose skills they once had is devastating. The Royal Children’s Hospital has been conducting many tests but Rye’s regression currently goes undiagnosed. Hopefully one day Rye’s family will get some answers. He is now labelled with ‘Syndrome without a Name’ (SWAN) because the specialists know he has a syndrome but it cannot yet be recognised. The hope was that regression will stop and that he may be able to re-learn some of the skills he once had, but this is becoming more unlikely as the regression has been continuing for a number of years. Rye’s future is unknown.
Rye’s day-to-day life is very different from kids his own age. He has numerous appointments and requires assistance with everything, from feeding, medicating, dressing and toileting (nappies) to transferring and being pushed around. He has many behavioural challenges, and is very sensory seeking – he enjoys banging on everything. However with this regression, Rye is now extremely happy and not frustrated at all – his family always finds the silver lining. He is happy in own world, entertaining himself. He always has a smile on his face and loves life, although he does have unexplained bouts of crying.
All of the medical stuff aside, Rye is a beautiful, loving child. All of the challenges he faces doesn’t define who he is. He is a kid who inspires people to better themselves and he lights up the room with his cheeky smile. Rye is so loved by the community. It does indeed take a village….
On October 20th this year, South Beach Project will be holding a very special event:
FUNDRAISER FOR RYE’S WORLD
The reality of Rye’s life today is that his severe physical and intellectual disability and substantial behavourial development means he is 100% dependant on other for all activities of daily living.
Rye has an extensive list of equipment that he requires every day and his ongoing medical costs to manage his regression, disabilities and support are also extensive. His inspiring family are planning to build a new home with a special zone purpose built for Rye, to keep him safe and appropriately cared for. The Johnson family would be forever grateful for any funds to assist them in building this special wet room and safe zone.
So join us as a community to help one of our own. Tickets are only $75 per person, for which you will enjoy finger food and drinks on arrival, live entertainment and fantastic raffle prices and auction items throughout the night.
KWD is 100% behind this fantastic event. We all be there on the night, and we’re also working behind the scenes. We’ve offered a complimentary KWD design consultation which Kate will personally undertake, specifying all of the hard finishes for the entire home. We’ll also be campaigning and lobbying our key supply partners to get involved, and to donate the materials for Rye’s special zone.
To purchase tickets give Jess a call on 0425 782 871. If you can’t make it on the night, please donate whatever you can spare:
Bank: NAB / Acc name: Ryes Therapies / BSB: 083 253 / Acc number: 12 940 6722
KWD’s corporate team undertaking for Steptember is to raise $10,000 as a collective – so please help us reach our goal!
Thank you for your support.
Donate here: https://bit.ly/2Ceq1YM