Our Mission: To raise funds to create awareness of the CRPS disease in children.
We Strive to: Ensure that these children do not suffer from this disease due to lack of knowledge or misdiagnosis.
It is often a sudden, traumatic and a deeply-personal experience that propels one into a more meaningful and purposeful life. A life changing moment can challenge us beyond our limits, and drive us towards giving back and paying it forward. We can suddenly find ourselves committed to a cause, of which we previously knew very little.
This was my experience. I inform the world about the rare medical condition which I suffered from when I was 10 years old, as well as create a support system with other families experiencing this traumatic disease. This is my story.
My name is Jed Kagan and I am 13 years old. In 2016, after sitting down, I tried to stand up and screamed in agonizing pain and from that day, our lives changed forever. My pain increased daily,and many tests were done with no conclusion. After 5 weeks of constant pain, a paediatric specialist recognised my symptoms and suspected Complex Regional Pain Syndrome a disease he had never seen in his 50 years of experience. A bone density scan confirmed it. Symptoms include excruciating pain, altered skin colour, skin temperature changes and the skin becoming thin and shiny. This disease starts by the nerves in the joint going haywire and sending a continuous pain message to the brain
CRPS can spread and children do suffer from full body CRPS which can leave them completely debililated. CRPS affected my left knee and I was unable to touch my leg for many months. It is a pain like no one can imagine - the highest level of pain measured in medical science. A touch of a feather on my skin felt like a blow torch fire.
I was traumatised thinking that no one could help me. Family and friends do not cope well with CRPS, as most do not understand the extreme nature of the disease. We all became housebound. I took 32 pills daily which made me anxious. We were told that children have a good prognosis because our nerves are elastic and can be realigned.
After many dead ends, we were directed to Red Cross War Memorial Children’s Hospital and were relieved that their pain clinic had seen this disease before. We soon realised that Red Cross, here on our doorstep, is one of the few hospitals in the world that have the knowledge to treat CRPS.
They started with an infusion and my pain levels went from 10 to zero in 4 days. My nerves went back to normal. I had to achieve daily goals and I was nurtured by different therapists. I had to struggle to claim back my life and walk again.
We expect medicine and pills to treat our diseases, but it is not always the case. We have to meet it halfway. Red Cross kept reminding me that a positive frame of mind is half the battle won. It is this learning that we share with others worldwide who are going through their journeys of bravery.
I became the 10th inpatient treated for CRPS in Africa. We have since guided 11 local CRPS families to their recovery. There are too many children who are told they will never walk again. This made us feel it was our responsibility to raise awareness about CPRS.
We strive to educate others about this complex disease and to raise funds for the pain unit. We HAVE JeducateD many doctors as each Jedi Tedi is accompanied by our story. Wherever he goes, others learn about our disease. We do not want children to be misdiagnosed, not treated or not believed at all.
We strive to give back to the Red Cross War Memorial Childrens hospital which gave me back my life and body. Through selling Jedi Tedis, we have sent our nursing unit to GOSH hospital in London to learn more about these complex pain diseases of which CRPS is the most complex.
We send Jedi Tedi Care Parcels all over the world to CRPS kids, to remind them they are not alone on this tough journey and that we are shouting loudly for them to be treated and for CRPS to be recognized as a treatable disease.
Jedi Tedis are a beacon of hope for children to know that they are not alone. We have donated 1000s of Jedi Tedis and we know that these children are reinforced by our mission of instilling hope that they CAN get better. We encourage families to realize that they must carry on fighting and not solely rely on the medical fraternity.
We are invited weekly to speak to the kids and their moms at the Red Cross WM Children’s hospital. We share our story and empower other families to be positive, reminding them that they are in the right place for their children to get better and that a positive mind frame helps with the healing process
We teach the families how to knit, sew and bead, and we all pay it forward to our wonderful hospital while educating others about these strange but very real diseases. We tell the families to trust their own instincts as we know that they know their children better than anyone else.
We support others going through their own journeys through our social media and WhatsApp support groups, where we also encourage hope and positive healing. we empower them to know that they can do it. We are so loud that many families world wide have found us and have contacted us for guidance
We work hand in hand with the red cross pain clinic so that the children suffering these pain diseases can be treated and claim their lives back. We know that all the children going through this kind of pain are heroes and deserve to be acknowledged and honoured.
My family have started an NPO, Jedi Tedi to fulfil our promise to these children. and to ensure that they get the help they deserve. We know that the medical prognosis in children is good, so we have to ensure that families all over the world know that their children can get better like those treated at Red Cross.
My message to you is to not wait. You don’t have to look far to find a cause that speaks to you. To offer a small amount of your time, empathy, positive energy or funding - I can guarantee - you can help, we all can.
As I always say...IF I CAN DO IT SO CAN YOU.