My sister Anna was born with a very rare genetic disorder called Alagille Syndrome (ALGS). There are only about 8,000 cases of ALGS in the United States and only a couple of hospitals who treat it.
Throughout her life Anna has faced many challenges.
The symptoms of ALGS, constant medication and regular doctors visits. Constantly having to explain her disease to teachers and classmates, which is often difficult and embarrassing. Stares from strangers and comments from people who are downright cruel.
It would be easy to dwell on the hard parts of living with a rare disease but Anna won’t allow anyone to pity her.
Instead, she has always found joy in knowing that God made her exactly the way He wanted to, different but still perfect.
When Anna and I began discussing Rare Disease Day, I could tell she wanted to do something big to celebrate. Rare people like Anna make the world a better place every day. I’m honored to let her use my blog to continue to do so.
Guest post by Anna Laurent
It’s Rare Disease Day 2015, everyone!
I’m so excited about the theme this year, Living with a Rare Disease because the focus is on those who provide the love and support necessary for us with a rare disease to get through each day.
These people are the parents, siblings, spouses, grandparents, aunts, uncles, friends and more, who are living their life day-by-day with a rare disease patient.
They are present for the lowest of times with their shoulder ready to be cried on and the first to celebrate the smallest of victories with us. (For instance, when my weight finally hit triple digits!)
These people don’t have to be involved, yet they choose time and time again to enter into the scary unknown of a rare disease. They possess an inner strength, able to support themselves and others.
My journey with Alagille Syndrome would be very different without the love and encouragement from these people.
As Rare Disease Day drew closer, my sister and I discussed ways we could celebrate.
It was important to us that we do something uplifting, something to celebrate the positive impact left on the world by rare people and those who love them.
So we came up with an idea for a challenge: Rare Acts of Kindness.
On February 28, I challenge you to complete an act of kindness and post a picture afterward with the hashtags #RareActOfKindness and #RareDiseaseDay.
I hope that these Rare Acts of Kindness will serve as a tribute to rare people just like me, as well as those people who support us through the roller coaster of a rare disease.
Let’s flood the internet with Rare Acts of Kindness!
To help you plan your Rare Acts of Kindness, I’ve created some printable cards.
Pass one along when you do your good deed and you’ll help spread the word about #RareActsOfKindness and #RareDiseaseDay!
P.S. You can purchase the shirts we’re wearing in our sister photo (and many more) at www.remarkablyraredesigns.com
A portion of all proceeds from Remarkably Rare shirts are donated to the Alagille Syndrome Alliance which funds research and provides support for ALGS families like ours.