Why I'm doing Jeans for Genes
This year I am supporting Jeans for Genes because I want to help discover treatments and cures for the 1 in 20 kids facing a birth defect or genetic disease. I’ve decided to fundraise for this important cause and I cannot wait! Please support my event or sign-up to run your own.
My eldest boy has been diagnosed with a genetic condition called Multiple Heriditary Exotosis. The diagnosis was when he was 5 years old, 6 years ago, just after his little sister was born.
It is related to his bones. Extra cartridge turned bones called tumors grow on his long bones.
His Humerous, Femur, Fibula and Tibia, Ulna and Radius are all affected as well as pelvis, and collar bones. They need to be constantly monitored as they turn cancerous at any time.
They affect movement and bone growth of his regular bones. Which in time can cause pain, deformity, numbness, tingling among other things. They fortunately can be removed at any stage but don't need to be removed unless they cause severe pain.
We are constantly figuring out new things with MHE via facebook groups from around the world.
Research will assist in finding why this gene is affected (with a deficit in heperan sulfate) and trying to prevent this in the future. He has a 50% chance of passing it on to his own children.
Please donate a little or a lot.
There are lots of genetic diseases out there that need our help.
Bake it BlueWe had a wonderful and successful bake it blue afternoon tea at work this week.
More DonationsI am loving all of this support for a cause that's super close to my heart.
Thank you thank you thank you!
Please share if you can!
Lumpy bonesSeeing different genetic conditions can be confronting. We all need help in finding more information these conditions. Thank you for reading Leisa
You guys rockMassive shout out to you all who have donated and those who habe shared!!
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