rare disease

Jed was diagnosed with CRPS, a chronic pain disease, a year ago and thanks to the dedicated team at the Red Cross War Memorial Children’s Hospital, he became the 10th child in Africa to be treated for the rare CRPS disease.

 

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CRPS (Chronic Regional Pain Syndrome) is a rare neurological disease affecting the nerve pathways in the body, causing extreme degrees of pain. There is no known cure for the disease and to date, only 10 children have been diagnosed in the whole of Africa.

Jed spent a very long time being misdiagnosed before the family went to the Red Cross War Memorial Children’s Hospital for help.

“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 Red Cross War Memorial Children’s Hospital and the support of my amazing family.” – Jed Kagan

“It’s been over a year since Jed regained his strength and began walking again. As a mother, I have tried to find the words to say thank you to the dynamic team at the Red Cross Hospital who helped us through one of our darkest times. As a family, we swore to give back and raise awareness in merit of other kids who are suffering with this disease that doesn’t receive the attention it deserves. ” – Shana Kagan, Jeds mother.

Jed and his mom have decided to raise R36,500.00 for the children at the hospital. The amount is being raised to help 365 children and each child will receive a ‘Jedi Tedi’.

“We hope to provide these children with a symbol of courage, triumph and perseverance while they are battling their various conditions.”

Jedi Tedi’s has recruited grannies to make the most beautiful teddies. The group is still looking for people to make Jedi Tedis so if you want to join, you are more than welcome and you don’t even have to be a granny!

“Our GRANS wanted to learn how to sew our Tedis and thus our Jedi Tedi’s have certainly been upgraded”

You can follow Jed’s story on his Facebook page and if you would like to donate, you can do so on their BackaBuddy page here.


Sources: BackaBuddy
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Tyler Leigh Vivier
About the Author

Tyler Leigh Vivier is a writer for Good Things Guy.

Her passion is to spread good news across South Africa with a big focus on environmental issues, animal welfare and social upliftment. Outside of Good Things Guy, she is an avid reader and lover of tea.

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