Today is National Biliary Atresia awareness day. BILIARY ATRESIA is underfunded, under researched and under identified. It attacks newborns and infants leaving paralyzed families with two options to treat: KASAI PROCEDURE which most of the time ultimately leads to LIVER TRANSPLANT (this as the other option).
This disease has taken the lives of many and continues to devastate families across the world when it should be the most joyous time – a new child in the world.
We are lucky, in most parts of the United States we have the proper hospitals to treat BA – in our case, the Cleveland Clinic Children's & Liver Transplant Team was in our backyard.
Through Brodie's Good Vibe Tribe story my hope is that you have been and will be able to educate others and if someone is struck with the unfortunate circumstance of their little being taken with this disease you can empower them with knowledge, our journey and other resources.
There is an organization that specifically focuses specifically on the liver – the American Liver Foundation. That was a critical educational resource during diagnosis and continues to be for us.
In October, The American Liver Foundation hosted the 12th annual Flavors of Northeast Ohio on Monday, October 17th at The Westin Cleveland Downtown. The event raised more than $119,000 for the ALF.
Yours truly, had the honor of partnering with the American Liver Foundation- Heartland Division as their LIVEr Champion. Brodie’s Good Vibe Tribe – Sliver of Liver Giver (this girl) was able to put a face and story to liver disease, and raised more than $12,000 for ALFs Fund the Mission – their biggest year to date!
(I have included a video clip of this – wouldn’t you know the memory ran out as Russ started filming so you only get the 2nd half)…
My personal mission to help with the R&D of Biliary Atresia, as well as supporting families going through the diagnosis and treatment is growing and developing BGVT.
“DON’T EXPECT CHANGE TO HAPPEN IF YOU DON’T MAKE ONE.”
I have struggled with this over and over – is this the right time in my life to do this? Can I really make an impact? Am I the right person to do this – I really don’t know anything about this world? The FLAVORS event was one thing that has fueled me to believe perhaps I am on the right path. It was an incredible opportunity to raise Biliary Atresia awareness with the 300+ attendees.
Then another opportunity popped up we were invited by the A Special Wish Cleveland Chapter to have a table at their princess ball event. We created a card making station to spread kindness to those who needed a cheer up and a smile.
The first person at my table was a Mom with a little girl – she looked at everything set up and said “Does this have to do with Organ Donation?”
I said yes, explained our story, she stopped and looked at me perplexed.
“I did the same for my son” she stated.
“When?” I gasped.
“18 years ago” she replied – “we were really an “experiment” at the time (meaning there were not a lot of cases that had a living donor to child). He is doing great.” she quickly followed up – “19 years old and doing awesome.”
Goosebumps. Tears. Lack of Words.
I have thought so many times about the bravery, the tragedy and the struggle of those who had Biliary Atresia strike in a time where medicine wasn’t so advanced, technology wasn’t so strong and knowledge was underdeveloped.
Here was a true pioneer on the front end of LIVING ORGAN TRANSPLANTATION who just happened to be the first person at BGVT table to randomly tell me her story. Coincidence??
The Alchemist has always been one of my favorite books – the author Paulo Coelho has some amazing ways of thinking and philosophy “And, when you want something. All the universe conspires in helping you to achieve it.”
I found myself then telling myself – if that is not a sign I don’t know what is.
Biliary Atresia is awful. It devastates the happiest time of your life. It rattles family to the core. It steals the innocence of a child in an instant.
Because of our medicinal world, because of technology, because of organ donation and organizations like Lifebanc and Donate Life America and Donate Life Ohio – it CAN BE TREATED and little Biliary Atresia Warriors are given a 2nd chance at life.
If you know someone going through this encourage them, let them know light on the other side is bright, normalcy resides and they too will overcome this.
To maneuver through the world of Biliary Atresia & Transplantation individuals must have the knowledge, desire and opportunities to treat and conquer.
Help me build a resource for others on our new website www.bgvt.org where we can story tell and create a place for people to learn about new beginnings and second chances.