Jedi Tedi news

September 18, 2018

 

 

 

Hello, we thought you may like to have an update on our LATEST Jedi Tedi happenings.

 

Jed and I attended 3 schools in Johannesburg two weeks ago, and Jed told all the teachers and pupils about how he felt during his journey with CRPS, we are aiming to create awareness for this disease as it can affect school kids.  While we were in Joburg, we were also interviewed at The Chai Fm studio, stay tuned to our Facebook page to listen to the podcast. Jed and I loved being in the studio and lets hope that a lot of people will listen and learn all about the CRPS disease.

 

Last week we were filmed by SABC3 for the morning Expresso show and we handed out Jedi Tedis to all the children at the Maitland Cottage Hospital, in Newlands.  The children loved their new Jedi Tedis and felt the love that the Jedi Tedis gave as they hugged and played with them.  We had such a great interaction with the kids in the wards, Jed and Liam did not want to leave their new found friends.
 

On Saturday night, the 15th September, Jed and I attended the Rare Disease South Africa Awards, with the Jedi Tedi team. Jedi Tedi was a finalist in the Rare Diamond Project category, which was for a project that has created a huge amount of awareness for a rare disease.

 

We attended the award ceremony in Johannesburg and we were blown away by the fact that the Rare Disease Community have recognised Jedi Tedi and think that we have achieved what some of them have.  We were humbled. 

 

Jed was called up on to the stage where there were 3 finalists in his category. There were only 15 finalists all in all, each one is a voice for awareness for a disease of a child suffering with no help, due to a lack of knowledge and awareness.   The majority of us at the function, were woman.. moms, who like me, cannot keep quiet and have assured that children in the future get better care for their rare diseases and that there is more awareness.  Some have had very sick kids, some are or were the sick kids and some were parents who have lost kids, some of them more than one, due to this lack of awareness and knowledge of their particular disease, and also sadly, sometimes due to not believing that it even exists.

 

We met Oscar von Memerty who has a very rare condition, 1 in millions.  We asked if we could take a picture of him and Jed for our school and his words were:  Jed, you are amazing, never stop what you are doing, my parents did not have anyone to help them.  He and his sister were diagnosed with this disease, she passed away after their first bone marrow transplant, when she was 5 and he was 2. They had the bone marrow transplant together.  He has since had two more bone marrow transplants. So even though we went to wish him for his unbelievable story of recovery, his first words were to wish us and we thought that was amazing! He was the guest of honour and spoke about his experiences and what he has had to endure throughout his life.  An absolute role model to all. 

 

So in the end, Jedi Tedi brought home a certificate and did not win the cup for our category, we felt we had won so much more from just being there and meeting these extra special people who are the voices for rare diseases all over South Africa.

 

Thank you for your interest and continued support.

Shana, Jed and the Jedi Tedi team

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