Help put the Light back in Jordens Life
$100 raised
1 contributor
4 Years running
Jorden is a loving 7 year old boy with a heart of gold. He has had years of medical appointments and an undetermined illness. He recently was diagnosed with Erythropoietic Protoporphyria or (EPP.) This means Jorden can never be exposed to sun and ...
Jorden is a loving 7 year old boy with a heart of gold. He has had years of medical appointments and an undetermined illness. He recently was diagnosed with Erythropoietic Protoporphyria or (EPP.) This means Jorden can never be exposed to sun and most artificial light. Exposure leads to pain, swelling and blistering. The more he is exposed, the porphyrin levels rise faster. There is no way to stop it but avoidance helps slow it down. There is no cure for this rare blood disorder and can lead to liver failure, gallstones, liver transplant and bone marrow transplant. His skin will gradually calcify as well. The local Physicians know very little about the disease so Mayo Clinic in Rochester Minnesota has put together a whole team for his treatment. They are wonderful!

Just imagine if your child would not be able to go swimming, watch him play on a baseball team, soccer team, or football team. He has to wear protective clothing with a special paste underneath if he is going to be exposed to any of the lights. The only light that is semi safe is low for LEDs. Jorden also has Asperger’s syndrome so not having his normal daily routine has made things even harder. He had to be pulled from school due to the lighting and will now have to be homeschooled. He has no interaction with his friends and peers. The objective is to raise money to purchase land and build a safe home and play building where he can be safe with his friends and family. His funds also help with medical expenses including trips to Rochester for appointments, medications and special clothing and other modifications as necessary.
This can become a reality with all of your help! Please help us make Jorden's life as “normal” as possible.

Thank You
The Fischer and VanSeveren Family
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