Rare Disease Day is TODAY February 28th. Not a lot of people may know the struggles of having a medical life day in & day out. This day is set aside for those that not only live with the medical world daily, but live with a rare disease that most others will never understand.
Our Jeremy has Sturge-Weber Syndrome and I've often spoke about SWS on my Blog. In doing so I hope that our family has helped shed some light on SWS and a little of what Jeremy lives with for the rest of his life. We know a few families with SWS who have a much different version of SWS & that is only one of the reasons it makes SWS unique. If you would like more information please go take a look at Sturge-Weber Foundation.org. We live with the unknown daily, but the point is we LIVE, we Laugh, we Love just like any other family.
Now we want to share some of our friends that we have met on our journey that also have a Rare Gene. They celebrate each new day as well. We hope you may take the time today to reflect on those who may not be "normal" whatever that word means. Remember that they have a wonderful & great life that God gave them. That God made them just the way he wanted & in his eyes they are all beautiful.
Mom & Son who share a Rare Gene
Go check out our friends on Facebook to learn more
Kaid has a whole beautiful a photo album you can look through that showcases some wonderful children.
There are so many more children, teens, & adults with a rare gene. Take the time to get to know them on the inside not just on the outside. You will see the wonderful spirit that lives in each & everyone.