03/01/2022
Happy Rare Disease Day!
Six years ago today, we were muddling through the hardest month of our lives as a family. Luke had been diagnosed with Gaucher Disease and had gotten his first port placed. He had even received his first infusion. We were learning about Gaucher Disease and what life would be like for our little guy.
It has been a LONG road, but here we are! We are in a place where we can think about giving back, paying it forward, and doing our part to improve the quality of life of those living with rare diseases. This gives us hope.
Yes, we still have hard days. We still wonder if we are navigating life as best as we can for Luke. We still get frustrated with his chronic pain and we still cry when things seem hopeless and too hard.
We have also had a TON of victories! We have hand-picked a stellar team of doctors from 4 different health networks that care for Luke, we can communicate confidently with healthcare organizations and providers, we know what to ask for, we know what labs are best for testing, we know what pharmacy we can rely on, we have a home infusion nurse who is detailed and precise, we have a network of friends and family who are there to help us and have fun with us, and we have our faith which brings such hope and peace into our home and hearts. We are getting good at this rare disease/medical stuff!
The Warrior Collective is already making moves. We have sent our first gifts out to recipients near and far. Soon, our website will launch and you can log on to nominate a Rare Disease Warrior that could use a little sunshine in their life. Stay tuned, and as you end this Rare Disease Day, pray for the 300 million people in the world living with a rare disease. Pray for their caregivers and families. Pray for their physicians and clinicians. Then make a donation, however big or small to The Warrior Collective.
