We have had a few people ask how they can donate to help get Ethan to the Cystinosis conference in 2023, so we decided to start a gofundme for him. Help us get Ethan and his family to California to attend the Cystinosis Research Foundation's Day of Hope conference. It is there that Ethan will connect with other people with the same rare disease, have some tests done, and be updated on the search for a cure. My name is Amanda Fenn, I am from Rutherford in NSW, Australia. I am a wife, a mother of 6 young children, and I am dedicated to supporting my son Ethan who suffers from a very rare genetic condition called Cystinosis. My 7 year old son Ethan needs medication every 6 hours to keep him alive. Without his medications, his organs will fail and the unthinkable will happen. There is NO CURE for Cystinosis yet, though there are some amazing researchers and doctors working hard on making our dream of a cure become a reality. There is currently an FDA approved stem cell trial taking place. Three adults have taken part in the trial and the results so far are very promising. We look forward to hearing more information about the trial at the Cystinosis medical conference in California in 2023.
Cystinosis is a metabolic disease characterised by an abnormal accumulation of the amino acid cystine in various organs of the body such as kidneys, eyes, muscles, pancreas and brain. Different organs are affected at different ages and without treatment some or all of these organs will fail. There are only 2000 people diagnosed worldwide with only 43 of these people being in Australia and New Zealand. We have been invited to attend the Cystinosis conference in California in 2023 now that restrictions are lifted and we are allowed to travel.
What does this mean you ask? Well this means that Ethan and his family will get to meet up with other families with the same disease (he tells us that he feels he is not alone when with others with Cystinosis). We will be able to gain some new and indepth information about the disease and find out more about improvements in the treatment of this horrible condition. This will also give us the chance to meet the people working tirelessly to find a cure for our little man and follow up on the stem cell trial. With the conference being held in California our wish now is to raise enough money for our family to attend the conference to remind Ethan that he is not alone when it comes to this disease and way of life.
Ethan has been the face of the Jeans for Genes campaign so you might have seen his face pop up in magazines etc.
You can follow Ethan's journey on his Facebook page called Ethan's Endeavour.
Ethan is now 8 and is still underweight for his age. He celebrates every 100 grams he gains and is devastated whenever he loses weight. Ethan hates taking his medication though understands it keeps him alive. The last few weeks he has struggled with his medicine and will often ask why he was born with Cystinosis. He occasionally breaks our hearts when he tells us, "he doesn't want to live in his body anymore". No child should ever have to feel that way.
We are trying to raise enough funds for flights and accommodation. However, we would love to make Ethan's experience extra special with a trip to Disneyland or 6 flags or anything else we could possibly include for him.
We appreciate your time in reading Ethan's story and hope you may be able to help in some way.