Main fundraiser photo

Cycle4Ed

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On the 15th of September I will be riding lap after lap around Centennial Park and not stopping until I have ridden at least 65kms.

Why you ask? 

Well this is Ed. Ed is 22 years old and has Cystic Fibrosis. 


Cystic Fibrosis is a genetic disease that 1 in 25 people are carriers of and 1 in 2500 babies are born with. CF generally affects the lungs and digestive system, causing an abnormal amount of thick, sticky mucus on the surface of the lungs, airways and digestive tract. This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in reoccurring infections, leading to irreversible damage. From birth, a person with CF undergoes constant medical treatments. For Ed it was twice daily physiotherapy to clear his lungs, numerous nebulisers, up to 60 tablets, hospital appointments and hospital stays 3-4 times a year for 10-14 days for IV antibiotics. 

In 2016 Ed’s health started to decline and a double lung transplant became the only option for survival and was listed for a transplant on the 2nd January 2017. Ed received the call three times, first in March 2017 but the lungs were not suitable due to the donor having Hepatitis. He received two further calls for transplants and made it as close as the operating theatre, but again, both times the lungs were not suitable.

Ed’s health continued to decline and he began to developed fevers with no obvious source of infection. His lungs had deteriorated so much that he is now on oxygen 24/7. After tests and CT scans they discovered Ed had a fungal infection in his lung. In March 2018 after months and months of treatment, Ed and his family was given the devastating news that a transplant is no longer a viable option as he would not make it out of intensive care post-transplant. 

I have known Ed since he was a baby and when I was younger I remember making multiple trips to the Sydney Children’s  Hospital  with my parents to see Ed. We would spend time in the Starlight room or play the hospital provided console. Ed would use the IV drip trolly like a scooter and zip around the hospital floor!

Ed’s strength and attitude is a true inspiration and by putting my body and lungs to the test I am hoping to raise as much money as possible to help his family cover some of the medical costs of treatment and oxygen, as well as hopefully allowing Ed to start ticking off some things from his bucket list. 

Any donation big or small helps and is much appreciated.

Ellen

Myself and Ed over the weekend (18/8) and the bike and some Lycra!



Donations 

  • Allan Shenouda
    • $250
    • 6 yrs

Organizer

Ellen Smith
Organizer
Haymarket, NSW

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