Event of the Week: 12 Hour Swim Relay Challenge Raffle Creates Awareness About Dravet Syndrome

January 27, 2014

Proceeds from Challenge and Raffle to Support the Cooper Sinclair Dravet Syndrome Foundation

The Cooper Sinclair Dravet Syndrome Foundation recently held their 12 Hour Swim Relay Challenge. The challenge, which was created to raise funds for the foundation, also featured a raffle that was drawn the 12th of January. Some of the prizes up for grabs included a Megalomania Dining Experience valued at $1200, a Rocky Fitness Centre six-month Gold Membership valued at $450, a 2013 signed Broncos jersey valued at $400, a Henderson Park two-day family getaway valued at $300, and a Webbers Retravision mystery prize.

So what is Dravet Syndrome? According to the Dravet Syndrome Foundation, the illness, also called Severe Myoclonic Epilepsy of Infancy (or SMEI) is a rare and devastating form of intractable epilepsy that starts in infancy. The initial seizures are often, according to the site, “prolonged events,” and at age 2, other types of seizures become more noticeable. The child’s development remains steady at first, but at age 2, development begins to decline increasingly. Children with Dravet Syndrome have higher chances of sudden unexplained death in epilepsy (or SUDEP). Children with this syndrome also have several associated conditions which need to be properly managed and treated. Such conditions include developmental and behavioral delays, orthopedic conditions, delayed speech and language issues, movement and balance issues, sleeping issues, sensory integration disorders, chronic infections, and disruptions of the autonomic nervous system.

Unfortunately Dravet Syndrome isn’t something that can be outgrown or somehow diminishes as the child grows older. There also currently isn’t a cure or more-advanced treatments for those with the illness. According to the Foundation, the current treatment options are limited, making the prognosis for those affected poor. The illness not only affects those afflicted, but it also affects their loved ones; a person with this illness needs constant care and supervision, which can become financially and emotionally taxing on their family members.

The 12 Hour Swim Relay Challenge was an event aiming to help Liz Sinclair and her family continue to provide the support and care her son, who is diagnosed with Dravet syndrome.

“Our event was a 12 hour relay swim that people from the local swim clubs, surf club, triathletes, and others formed just like relay for life,” said Sinclair. “They were all very serious and competitive.  We started at 5 am and went to 5 pm.  During 10-2 we had a petting zoo, jumping castle, kids swimming races, ice cream van, coffee van, sausage sizzle, and raffle.  It was all to raise money for the ongoing support of our son cooper who has Dravet syndrome….We also raised awareness about epilepsy too.”

To promote the event, Sinclair took to the internet and conventional media.

“I created a Facebook page.  We sold raffle tickets at a local shopping centre and at the markets.  We appeared on local radio and national radio,” she said.  “We were in the local paper and the larger regional paper…  We were on Channel 7 local news.  We did a sausage sizzle outside of a fishing store in Rockhampton.  We put flyers around town in shop windows.  The best way to get the word out was probably Facebook, email, and good old fashioned calling on the telephone.”

The swim relay went off perfectly. “It was very successful,” said Sinclair. “There were about 100 swimmers and about 250 people came through the door during the 10-2 time.  We raised about $25000.” This was Sinclair’s first time creating an event like this, but to others, it probably seemed like she had been creating events like this for a long time. “This was our first event and we got a lot of positive comments about how well run and professional our event was,” she said.

The best part of the day was Sinclair’s son joining in on the fun. “My favourite part of the day was when we got Cooper to hop in the pool with us for the last lap of the day,” said Sinclair. “Everyone was clapping and cheering for him with us.  He didn’t understand that the day was for him, but he seemed to realize everyone was clapping for him.”

If you’re planning your own event similar to this one, Sinclair advises to get organized and keep tasks small. “Make lots of lists, set small goals at a time otherwise you will get over whelmed,” she said. “Persistence beats resistance.  Be organized.  No one will do it as good as you will but people want to help and being thankful for the support and letting people help is way more important than doing it all yourself.  It doesn’t need to be perfect. Keep it fun and don’t stress too much.”

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