On the 18th November 2018 from 9 am till 3 pm Stand Up Paddle SA will be supporting a Come and Try day at the Patawalonga Shore (Adelphi Terrace & King Street). The event is being organised by Sarah and Ron with the support of Stand Up Paddle SA. Proceeds raised from the event will be donated to the Friends to support the purchase of an Oxygen Concentrator which will be loaned out to Lee.
Oxygen concentrators can provide pure oxygen to patients by filtering air rather than them needing to carry heavy oxygen cylinders. There is a need to provide these to patients where this portability is valuable, enabling the children to continue their daily lives, such as attending school, with minimal disruption. These are used by home patients such as Lee.
Entry fee $50 per single or $100 per family with 80% of the entry being donated to Friends and is tax deductible.
Run by qualified ASI SUP Instructors paddles also receive bonus sausage sizzle.
Thanks to the support of Sarah, Ron, Stand Up Paddle SA and the Perfect Cup Popup Cafe. Their goal is to raise $5000 for the unit.
Please come down and support the event and assist these generous people change Lee’s life.
Please read Lee’s story below.
Lee is a young 14 ½ year old boy with Filamen A syndrome (a connective tissue disorder) that has led to chronic restrictive lung disease (similar to emphysema) as a young child.
He has been reliant on continuous oxygen since birth and has spent long admissions at the Women’s and Children’s Hospital his whole life.
Lee is awesome. He leads a happy life with his family in Woodville West and he has just started out at high school.
Due to Lee’s condition, he becomes very breathless with activity and at times can only walk for a few meters and then stop and rest. Over the years Lee has had to use oxygen via heavy C cylinder bottles that he or his mother Cel would carry in a back pack or walk with a trolley to follow behind him. This just didn’t make Lee feel very ‘normal’ at school, so overtime he preferred just to sit in his wheelchair and not participate in any exercise class at school or just use oxygen as a rescue medication.
The funds raised from the Paddleboard event will assist with the purchase of a portable oxygen concentrator that is light weight (maybe around 2 kgs) and will mean that Lee can be less conspicuous at school and wear it as a ‘man bag’ or in a back pack. This will also give Lee the independence he needs to get out and about more and walk around his high school with his friends. When Lee trialed a unit provided by the hospital he managed to complete a 7 ½ minute exercise test here at the hospital and kept his oxygen levels up to a safe level so we knew it was making a difference.
“We are really proud of Lee for trialing the new oxygen concentrator as it is giving him more freedom to still live a more active life without the risk of heavy oxygen equipment” explained Lee’s parents.
Lee’s parents feel if he could be provided with his own concentrator it would allow him to do a little more each day. Lee’s family would like to thank the Friends of WCH and their supporters for thinking of Lee when raising these funds and appreciate how important this type of equipment is in the community.
Lee and his family
If you cant make it down and would like to make a donation that’s fine please click on tax deductible donation and list Paddleboard as your reason for donating.