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Inspiring people who make a difference

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The Butterfly Child

Every so often a rare magical beam of light enters our world, makes it brighter, shines an internal light so brightly on something important and then leaves this  world a little darker when it goes. This past week that is exactly what happened when the world lost 17 year old Jonathan Pitre, on April 6th.

Jonathan Pitre was known as “Butterfly Child” because of the rare disease he had called Epidermolysis bullosa, which makes the skin as fragile as a butterfly’s wings. The disease also known as EB, is often referred to as one of the worst diseases known to modern medicine . The reason is that the slightest scratch or blister results in wounds similar to third degree burns and children living with EB are in constant pain because the skin never heals properly.


PHOTOGRAPH BY George Harrold / Barcroft Media

However, that pain became a source of strength for Jonathan whose mission was to raise awareness and  funds for the disease. Jonathan became an ambassador for Debra, the nonprofit organization dedicated to helping support families with EB.

The world first met Jonathan a few years ago, when James Duthie, did a documentary film called The Butterfly Child which told the story of this amazing young man and the life he and his mother experienced living with this disease.

James Duthie, said about Jonathan, “What really made him proud was to be able to draw attention to the disease, to raise money for it, to educate people on a disease that nobody really knew anything about except the families that were living with it. I’m thrilled he got to do that in his last few months because it really gave him purpose. I think that brought him a lot of peace in his last months.”

Jonathan’s positive nature, determination and sense of purpose made him an inspiration to all. The world will be better because he was here and not quite as bright without him. His mother said in a statement on Facebook, “Jonny’s story has been made very public over the last years as he invited you into his life and daily struggles with EB, as he tirelessly fought to raise awareness for this horrific disease. I am proud to say you did Jonny boy!”

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Never forget….

“No day shall erase you from the memory of time.”

Virgil

It is almost impossible to fathom that sixteen years have passed since that fateful day September 11th, 2001. We all remember where we were when we heard the news. Our brains could barely comprehend the surreal images being flashed on our televisions. Family members called family members, all of our lives were forever changed in that moment, and our innocence lost.

I will never forget taking my young son on a private tour of the makeshift 911 museum a couple of years after that fateful day. Our tour guides were the survivors’ families, the brother of a fireman, the other lost her husband in tower two and both of these grief-stricken people walked us around the Twin Towers perimeter of the rubble, while recalling the path that their loved ones took that morning of September 11th.

When the tour ended at the American Express Building, we all gathered around the fountain of eleven tears that was created for the eleven American Express employees that lost their lives. There was not a dry eye amongst us as we watched tears drop into the fountain and roll down each others faces recalling the stories, the people, and the lives which ended too soon.

Last year we went back to NYC and took our youngest son to the 911 museum, a cavernous space that was filled with thousands of people and yet, the museum is silent. Each person walking through, what was the bottom of the World Trade Center buildings, remembering, reliving that day, the loss, hearing the loved ones memories of each of those faces, reminding us never to forget.

In the wake of Hurricane Harvey and Irma, it is overwhelming to think of so much suffering, yet it is up to each of us to remember that, “No day shall erase you from the memory of time.”

Charity Matters.

 

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Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The Clarity Project

 

On the heels of last week’s post about Once Upon a Room, a friend and follower of Charity Matters reached out to share this amazing story with me about a Southern California girl named Claire Wineland. Claire was born with Cystic Fibrosis, a disease that creates an overabundance of mucus and ultimately results in respiratory failure. She grew up knowing that she is terminally ill and what we would think of as tragic, she simply uses as fuel. Her message and life are truly remarkable.

Claire has endured over 30 surgeries in her short 20 years and has spent an incredible amount of time in the hospital. About six years ago, after being in a coma for over 20 days, flat-lining twice and being given a less than 1% of survival, Claire survived. She came out of the experience determined to help others with Cystic Fibrosis. From that near death experience began the creation of the Claire’s Place Foundation,whose mission is to relieve families financially with CF, to help with their rent, mortgage, car payments, etc.

 

 

The foundation became a way to celebrate Claire’s life. She recently said,”It is important for people who are sick to feel empowered. It gives them a reason to take care of themselves.” And if that wasn’t enough, Claire decided shortly after in high school to begin a YouTube series called The Clarity Project, where she talks about topics such as how to talk to a sick person or even what it is like to live like you are dying.

 

 

Claire recently moved out on her own, decided not to go to college because she is not sure she will live long enough to graduate. She is spending her time sharing her inspirational message doing Ted talks, running her foundation and recently partnered with Zappos to take on project similar to Once Upon a Room with children’s hospitals in Las Vegas.

 

 

I do know how precious and unexpected life can be but Claire’s message is a reminder to us all. If you give yourself one gift today, listen to Claire’s talk (above) at a recent Zappos event. She is a reminder to each of us how precious life is, how blessed we are to have our health and regardless of our circumstances, that someone always has less than we do. Claire’s life is an example to each of us, that we not only have the power to help…. but more than that….. to live our lives fully.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

A significant life

“Striving to be of service is not only a noble thing to do, it’s the best way to lead a truly fulfilling and significant life.”

 Michael Josephson

The other day, a friend of mine who started a non-profit called Once Upon A Room.Org and I met for a quick catch up. I told her that I really wanted to interview her for Charity Matters and she said, “Don’t interview me, come and join me….and bring your son.” 

I came home, thrilled about the invitation, my 16-year-old son….well, not so much. I heard a variety of excuses, his summer job, things he needed to do, etc….however, I persisted. Without having a full spoiler alert (the story is coming next week) he relented, as you can see from the photo above.

He was late for his job, his first job ever, and very stressed when he left our work at Children’s Hospital Los Angeles. Our service had made him much later than I had told him. I love serving others and this experience was magical and yet, I felt guilty that he was late for work and thought that perhaps….maybe…just maybe, service isn’t for everyone and had I pushed too hard?

It was about an hour into his job, that I received a text. It said, “Thank you Mom. Today was so much more than I expected. Even though I was late for work, it was worth it. I had fun and thank you for bringing me with you.”

His text said it all. Leading a significant life is not about looking at the mirror, it is about turning the gaze in another direction. Service heals us all, only if we let it.

Charity Matters.

 

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Live for Others Foundation

tim-vorenkamp

No matter how many post I write, the miracle of the human spirit always continues to inspire me and leave me in awe. The one I am about to share, is no exception. It is the story of an Orange County, CA teenager named Tim Vorenkamp who was diagnosed with a rare type of cancer called Synovial Sarcoma. A cancer so rare that is only strikes 1 to 3 out of every million. The boy as rare as his cancer, determined to make a difference with the hand he was dealt……which is exactly what he did.

Tim used his illness to help bring awareness to this horrible disease and to establish the Live for Others Foundation.

Sadly, Tim lost his battle on January 10th, 2016 but his legacy lives on in the foundation he and his family began. As he said in the video, ” Battling cancer you never lose, and you will never lose. Even if one day the fight ends! Once something like this happens, you never lose, you just start a new journey.

Charity Matters.

 

 

Copyright © 2016 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.