Rare

May 8, 2023

Outside of being a CEO for The Leader Co. I love to serve in the not for profit sector. I have the privilege of sitting on the board of directors for the PFIC Network as President. Here is a talk I did in Orlando Florida at The PFIC Family Conference encouraging the community full of parents, patients, volunteers, staff, doctors, researchers, and advocates. The rare life is in all of us and its precious and valuable. Hope this adds value to you even if it’s in a small way.

When we found out that our child was diagnosed with PFIC, he was 6 months old. His name is Armando and for those of you live you probably have seen his poster with his story. One of the things that caught us off guard when we heard what he had and his whole diagnoses journey, was when we heard the word rare. I don’t know about you guys but when we heard the word rare it was like a ton of bricks just hit us, we didn’t know where it came from, we didn’t know what it meant, it was painful, it was a lot of different emotions and I think a lot of you can probably understand and connect with that.

The thing about the word rare, especially in our community is that it is connected with hurt, disappointment, impossible maybe, no cure, it means we are alone maybe, there is no community, that word can come across very negative. My wife and I completely felt that until we attended our first PFIC family conference back in 2019 which really changed that.

I started thinking about the word rare a little bit different. Which I wanted to encourage you with a little bit, just because it’s rare doesn’t mean you have to do it alone. I think I’m preaching to the choir because all of you have chosen to be here and I hope if you are looking for more community you will find it.

If you can see what I have in my hand you will see that I have a big diamond ring in my hand. It’s my wife’s and yes It’s that big. Actually it’s not, but just to be clear it’s fake so don’t come and rob me after thinking I’m worth a lot of money. 

This is what I’m trying to get at, this is a diamond and diamonds are considered rare. I don’t know too much on everything that goes into creating diamonds and discovering them, but one thing I do know is that they are rare, valuable, they go through a lot of pressure, it takes a long time for them to be formed. In fact when they get discovered they are really dirty, they have to be cleaned and are not always shiny. But they are valuable and rare which makes them worth a lot.

Its interesting that something like this that shines and is beautiful and can shine light like it does is rare. I’m hoping to encourage you today as you are thinking about the word rare as it refers to rare disease and maybe losing a little bit of hope. Think of it from a diamond perspective which actually is not necessarily a bad thing. Maybe rare is the fact that you are having an opportunity to shine in a way that you have never shined before. Maybe for the first time you need to hear whether you are the child, the parent, the support in their life or family member, maybe you need to realize that actually rare is a precious thing and you might be struggling with this disease but that’s not the end of this.

 We are all on a journey and I can’t stand up here and tell you this is how it’s going to end or this is the direction we are heading. I think at the PFIC network we are trying to stay positive and optimistic and put resources and work together to try to first of all improve the quality of life or give you hope and support and join you in the journey. There might be an opportunity here in your life right now, I have met so many of you, I have some good friends in this room today because of PFIC which is kind of weird. I know some of you way better then I know some people in my own city. We have a connection, we understand each other on a level that other people don’t understand. That’s rare, this community is rare, but that’s not a bad thing, this is beautiful. What’s happening here is a community that can understand each other,

I hope this small analogy gets you thinking about that. Diamonds are rare but there is beauty about this. If your feeling like quitting or throwing in the towel because you don’t have any answers, don’t. Try to plug in to this PFIC community, this is an opportunity for all of us. We may not have all the answers, but we may be able to walk along with you, tell you “when I was in that scenario…” or “two years ago when I was feeling like that this is what I did.” You just never know what that could turn out to be like.

When I was growing up I didn’t think one day I’m going to be part of a rare disease organization on a board of directors and be the president. That wasn’t part of my dreams, but it  did happen.  Embrace the cards that were dealt to you and figure out how do we make the best of this. It’s a privilege to sit on the board and serve in this way. Hopefully in a small way impact your lives.

Grow as you go!

Walter Perez – Founder/CEO – The Leader Co. Inc.

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