Raising awareness of CRPS one Jedi Tedi at a time

Says Jed’s mother, Shana Kagan: “We have also raised almost R36 000 through our BackaBuddy fundraising initiative, which will go towards creating awareness of complex regional pain syndrome (CRPS), a rare disease that causes severe pain in the arms, legs, hands or feet of sufferers.”

It all started when Kagan’s 10-year-old son, Jed, was struck with CRPS. It was only after a string of misdiagnoses that Jed’s desperate parents sought help at the Red Cross Hospital. Finally, he received the treatment he needed – and made a remarkable recovery less than a year later.

As a tribute to the hospital staff, and to help other children suffering from this disease, Jed and his mom created Jedi Tedi, a non-profit organisation which focuses on raising funds for the hospital on an ongoing basis. To this end, and in a bid to raise awareness about this rare disease, Jed has already given a number of motivational speeches.

“We are now into Phase 2,” says Kagan, “in which we will (Jed)educate people and try to create awareness about the disease.

“We have also started a Jedi Tedi package donation drive. For each CRPS child we hear about anywhere in the world, we send them their own personalised Jedi Tedi, along with other items that will make them feel special while they are going through their pain journeys.”

Through the Jedi Tedi campaign, Kagan is also reaching out to the mothers of kids suffering with CRPS.

“Although we cannot advise them medically, we are enforcing the fact that they must not give up on their children,” she says.

“The specialist team at Red Cross are beyond great and one of a kind. They are now asking Jedi Tedi to sponsor them to host pain awareness days. We are very excited to be taking this next step hand in hand with them.”