Toy drive highlights rare diseases
Cape Town - It was only with the help of staff at the Red Cross War Memorial Children’s Hospital that Jed Kagan’s severe pain from complex regional pain syndrome (CRPS), a rare disease, ended, and the 10-year-old was able to live a normal life again.
More than a year since his recovery, as a project to say thank you to the dynamic team at the hospital, he is part of efforts to raise R36 500 to provide 365 patients at the hospital with their own teddy bears.
In Jed’s honour, his mother Shana has created a non-profit organisation called Jedi Tedi, which focuses particularly on raising funds for the hospital on an ongoing basis. Funds are generated by selling unique, handmade toys, Jedi Tedis.
After doctors initially struggled to diagnose Jed’s condition, a family friend referred the family to a paediatric specialist with years of experience in treating children suffering from rare illnesses.
Shana said: “(The doctor) noticed in his assessment that Jed’s one leg was cooler than the other; it was slightly swollen and also discoloured.
"Recognising these symptoms, (the doctor) suspected Jed had a condition known as CRPS. After a day of deliberation the nuclear medical doctors confirmed Jed’s knee tested positive for the disease.”
CRPS is a disease brought upon by injury or sickness. It causes extreme pain in a region. In simple terms, the pain results from a series of incorrect nerve signals sent from the affected part of the body to the brain.
After searching from pillar to post for an answer and solution to Jed’s severe pain, Jed’s luck changed when he landed on the steps of the hospital. “When we arrived at the Red Cross, Jed was unable to walk, but with determination he powered through, gritting his teeth through the pain,” said Shana.
Sister Angeline Schrikker and Rukaiya Mowzer, in particular, formed a special bond with Jed, always keeping him in positive spirits.
Jed became the 10th child in Africa to be treated for CRPS and, after only four days at the hospital, was discharged on November 25, 2016. By the end of December he was already walking without crutches.
Jed has given a number of motivational speeches about CRPS. He has a soft spot for the hospital and is thankful for the role that staff there played in his recovery.
He said: “Here I am, a smile on my face and a spring in my step. And the truth is, I could not have done it without the Red Cross War Memorial Children’s Hospital and the support of my amazing family.”
Thus far R24 249.47 has been raised for the hospital, enough to provide 242 Jedi Tedis to the children there.
Donations can be made at https://www.backabuddy.co.za/jedi-tedi-campaign