Day +38 | Paizlee Davenport Stem Cell Transplant
Counts back up-
I wanted to share a thought this morning.
Three years ago, we had to come to the understanding the work we did may not benefit our children. I mean really, we had to grasp that. Even though Kruz & Paizlee are the driving force and heart of KFK, they could miss the cure but the passion for our work had to be beyond them, the ultimate goal was to have no other children suffer this horrible disease.
It was bigger than just helping our children, though. We wanted to make a shift in rare diseases and cure SIOD indefinitely, not treat the symptoms- CURE this horrible genetic mutation! That is what the lab works towards every single day. That is why every dollar raised through KFK goes to SIOD research and nothing else. We created our bylaws within our foundation to only support research because It takes every dollar to sustain this expensive research. Every. Single. Dollar. Actually $30,000 dollars a month to be exact. But we’re doing it.
We worked tirelessly to form a treatment plan after the only hope we were given three years ago was “we hope they are not a severe case.”
No one had answers. The doctors did not even want to hand the piece of paper to us where the first paragraph stated “a rare and fatal genetic disease”.
Here we are 38 days post stem cell transplant, with our second child- engrafted, and able to live more years with a new immune system, along side her brother, to see the SIOD cure.
Dr. Lewis and Dr. Alice working together, found that for a child with SIOD (with managed kidney and vascular problems) a stem cell transplant before a kidney transplant with the same parent donor will allow SIOD children to live a longer life, this also allows no immune suppression post kidney transplant since the same donor donated the new immune system.
The magic is found when you don’t settle with the —-“I don’t knows.” It’s hearing “no” but continuing anyways because you feel it deep in your bones that it can be done. The miracles happen when you push forward on faith.
I still remember being advised not to take on the research and to raise money to support my families medical needs instead. I didn’t listen. Actually, we did the opposite. We started a foundation that could not support our families needs, instead it supports research.
I’m grateful for our researchers who believed in us, who said yes, and who is now curing an incurable disease.
Here we are, with 3,400 white blood cells and in her little body to sustain her in this life, where just three years ago- the hope for a stem cell or bone marrow transplant for a child with SIOD, was not in our cards. (Thank you, Dr. Alice for your transplant😘)
Grateful. Thankful. Jesus.
Happy Sunday, everyone!