If you have or know a baby or child, look at them. Now imagine receiving a phone call from your pediatrician stating that your precious innocent love has an extremely rare and fatal genetic disease. The diagnosis is Niemann Pick DiseaseType C (NPC)
, also referred to as childhood Alzheimer's disease. This means in short, Woodrow is unable to break down complex lipid compounds forcing the lipids to accumulate inside the cells of multiple organs and tissues throughout his tiny body, including his brain. The lipid build up produces an inflammatory response and eventually leads to cell death, affecting all of his body systems. There is no cure.
I am reaching out with an ask of prayers and assistance for my sister and brother-in-law, Denise and Rickey Miller, and my sweet nephew Woodrow Troy. They are first time parents and have begun an uncertain journey searching for clinical trials and treatments. These trials and treatments have the possibility of slowing the course of NPC's progressive deterioration of the nervous system. This journey includes frequent travel to take Woodrow to the few NPC specialists and geneticists existing in the US. Woodrow is just 1 of approximately 500 diagnosed cases worldwide. Researchers are hopeful that a cure is near and continue to provide clinical trials with positive outcomes for families desperate to provide quality of life for their babies, experience developmental milestones, birthdays, little league, high school graduation, and create memories to cherish for a lifetime.
Denise and Rickey understand that God's plan is not "their" plan, and through their faith are focused on baby Woodrow's health, living in the moment, and accepting the continuous sacrifices that must be made to be able to provide for his needs. This decision may include uprooting their family to be near medical treatment facilities, frequent travel for bi-weekly infusion treatments, monitoring & follow-ups, insurmountable medical expenses continuing to accrue, inability to work, financial burden, emotional turmoil, and so much more to be endured. Yet, this all pales in comparison when the life of our family's precious lil' Woodrow is the focus.
Please consider giving out of love for this new family, anything will help and be greatly appreciated for this long untraveled road ahead. For those of you that are parents or can relate, I too know that there is not any length that I would not go, no stone left unturned, to protect and provide for my children. Please join me in supporting Denise and Rickey and blessing them both with the opportunity to build all the memories they have dreamt of with #WoodrowTroyDoubleToughCowboy.
A Wells Fargo donation account has been set up under "Woodrow Miller", as well as, this gofundme for those able to give.
"Trust in the LORD with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths" Proverbs 3:5-6