Please help us save Kruz and Paizlee. First siblings in USA with rarest type of dwarfism, also fatal type. Life expectancy is not past 10 years old. To be able to save our children we have to raise 1.5 million this year to jump start research. With only 5 cases in the country, you can imagine there is no funding. Research is ready & it's promising. SIOD research will be groundbreaking and open doors to unmarked territory helping unfold other areas of disease that do not even have a path to follow right now.
We have to have funding to to be able to save Kruz and Paizlee in time. If we don't do something fast, symptoms will continue; swelling, back pain, severe migraines, nephrtoic syndrome, extremely weak immune system and high blood pressure. Then kidney failure, bone marrow transplant, hip replacements, high risk of stroke, chance of cancer, memory loss, skeletal dysplasia issues until their small bodies will not be able to take it anymore.
They are happy & pain free right now, we enjoying every single day.
Being a "little person" is the least of our worries. With this rare-genetic disease Kruz and Paizlee received 2 bad mutated genes Kyle and I had no idea we even carried, causing this disease to go active. Their mutated gene has "lost it's instruction map" causing this disease to destroy their body, all organs and vital areas of the body. We can STOP this genetic mutation in time and "reactivate" this gene to start working again to "rescue their body". We have the resources and technology, we simply need funding.
To know there is a way to help your children, potentially even save their life but you do not have enough money to do it, it's devastating.
It was a 1 in 3 million chance Kyle and I would be carriers of this particular mutated gene. We had a 25 % chance to pass both mutated genes to our children. We passed both to BOTH of our only children. With these odds, you know God has a big plan. He is carrying Kruz and Paizlee in the palm of his hands and they are changing lives.
Please join this fight with us, every dollar (even if it's only $1) will impact lives in a HUGE way.
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