07377 091552 info@raccuk.com

Jennifer’s Marathon for Rare Autoinflammatory Conditions

Raising funding and awareness for Rare Autoinflammatory Conditions Community – UK (RACC-UK) because My son has suffered hugely from a rare AI Disease.


When your child is ill you feel pretty helpless. We sadly know this feeling more than most, so in light of this I have decided to partake in a weighted marathon in support of  RACC (a charity which informs, helps and provides data to families of those in the same situation as us, and medical bodies researching autoinflammatory diseases).

Our son, Theodore/ Theo/ Ted/ Teddy/ T bomb or as we call him Ted Bear has had a rough first year to say the very least. He has been diagnosed with a rare autoinflammatory. In short, every 30ish days Theodore’s body attacks itself for no apparent reason in a cyclical pattern. His core temperature rises so high he has seizures, he has swollen, painful joints, a mouth full of ulcers and medication cannot help these flares- except for a corticosteroid which comes with its own side effects. He has 5 days every month where he is usually hospitalised and very poorly. It is not known what causes PFAPA Syndrome, why or how to treat it. All we are able to do is tackle the flares head on once they arrive. 

This has obviously been very distressing for all involved. Theodore has been the definition of bravery throughout this and for that I am thankful. 

I desperately want to do my part to help treat those suffering, and the way in which I have decided to do this is to raise funds for further research and awareness- knowledge is power! I have decided to do a marathon with the weight of my (ever growing) son on my back. He currently weighs roughly 25% of my body weight… so I’m not sure where we will be come May! Theodore is going to join me for the final mile, and probably start off the marathon on my back in our rather nifty, suspension installed childcarrier! 

I will be taking on this challenge with the Suffolk Running Centre in May 2021 (date to be confirmed covid dependant), the route will be centralised around our home of Dalham, Suffolk/ Cambs. 

It would mean a great deal to me if you were able to donate any amount at all to a charity which is dedicated to supporting those who need it and gathering as much information and data as possible to try and establish more effective treatment plans for those suffering. 

A sincere thank you ❤️

Jennifer Fraser is fundraising for Rare Autoinflammatory Conditions Community – UK (RACC-UK) (justgiving.com)

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