This past week I had a long over due catch up with my friend Theresa Gartland of Operation Progress. Theresa who is originally from the Washington DC area came to Los Angeles, more specifically Watts, right out of college. Watts is still considered one of the most dangerous places in Los Angeles, but Theresa fell in love with the children and families in Watts. In the past decade plus, she has worked for a few different organizations, all with the same mission of making Watts a place for children and families to thrive.
Today, I am handing the handing Charity Matters over to Theresa to share her remarkable story of service…she is a true inspiration to us all.
As I am embarking on my 15th year of working in Watts and serving the youth of the community, I cannot help but reflect on what keeps me energized and going, of course two words…the kids! Everyday, I’m so grateful that I get to fulfill my life purpose by provide the most incredible, life-changing opportunity for some of the most deserving youth.
Attending Holy Child High School in Potomac, Md, I was taught the values of giving back through action not words. This rang true for me during my high school service trips to an afterschool program in Southeast DC. During my service, I would play with the children, help them with their homework, and spend time getting to know they. I quickly learned that they only difference between them and me was our neighborhood, and they were just as deserving as all the opportunities I was given. It was my actions that were making an impact. Through service and volunteering I had found my voice, it sparked my passion but I no idea it would ignite my career.
One of the biggest lessons that I have learned through my work is that each child deserves to feel safe, validated and know that someone is proud of them. This has become my mission, to make sure every student feels apart of something bigger than themselves, to feel validated, nurtured, and empowered.
My biggest success thus far, has been watching two girls that I have known since they were in 2nd grade, now sophomores at an all girls catholic high school, flourishing and succeeding. To be apart of their journey and see how OP has literally changed their life trajectory has been of the biggest rewards of my career.
It’s truly been a joy, honor and privilege to work at amazing schools and organizations in the Watts community that are so committed to inspiring, fostering and developing the youth. Being able to be there for a children, to motivate, challenge, and encourage them is no short of a miracle.
Thank you Theresa for reminding us what it means to serve, you are an amazing example to all.
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.
Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a number of years, and last week we not only sat down together to catch up, but my son and I were invited to help Jennifer, her daughter Josie, and best friend Sienna, with their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.
Rather than me continuing this fairy tale, I think the conversation tells this story the best.
Charity Matters: Give us a little back round on you and Josie?
A little history about Josie and I…I am the very proud, adoptive mother of Josie. Josie and her sister, Teresa, were born in Guatemala and were conjoined at the head. They came to the US at 9 months old. At 1 years old they underwent surgery done by a 50 person medical team to separate them. After 23 hours in the operating room our two beautiful girls were rolled out in 2 separate beds.
We were granted a miracle that day and have spent everyday since trying to do everything in our power to better the girls’ lives and those around us. As one can imagine our medical journey did not end at separation surgery. There have been countless hospital stays with over 30 surgeries combined and hours upon hours of physical therapy.
We know from first hand experience when you are in an environment that makes you happy and calm healing is easier to achieve. It was important to Josie and I to help others in medical situations feel better. The main portion of our program is to decorate hospital rooms for pediatric patients going through active medical treatment.
Charity Matters: What was the moment you knew you needed to act and start your non-profit?
Jennifer Hull: Once Upon a Room has a tag line…Every child has a story. My sweet daughter, Josie spends so much time in the hospital. Every time we are inpatient, I noticed her spirits were lifted when we would bring in items that were ours and set up a mini “house” like atmosphere. We have had the pleasure of meeting other patients and families over the years and when we would visit them we would bring something to brighten their room we could see the joyous effect it had.
We wanted to expand our reach and really transform the hospital setting into a personalized, happy environment. Josie and I got excited about the possibility of spreading joy to others in the hospital. We knew we needed to do this. We wanted to serve others and this was such a perfect fit for us.
Charity Matters: Who along the way has helped you make this journey happen?
Jennifer Hull: Siena Dancsecs is a huge contributor to our success and is one of Josie’s best friends and has been through so many ups and downs with Josie medically. Siena’s passion to help others started to light on fire. At 11 years old she called to tell me that we the organization should be named Once Upon a Room. She said that our mission should be to serve pediatric patients in and out of the hospital that were in active medical treatment.
Siena says, “Through my friendship with Josie I wanted to do more. We do what we do because we can see the long-term impact it makes. I remember getting asked to go to the hospital for the first time. I honestly had no idea what to expect, what I would see or what I would hear. Normally when I think about a hospital I think about all of the needles, medicine and doctors. We get to see a different side of it. When we walk into those rooms we get to brighten this patient’s room with what they like. It becomes all about them in a different way. It’s not all about their disease or injury; it’s about them as a person. That’s what makes it so special. Getting to make these patient’s days just a little bit brighter. And truly it affects not only their environment but also everyone around them. It brings this glow to their surroundings, helping them start fighting a little harder.”
Charity Matters: What fuels you to keep doing this work?
Jennifer Hull: This is an easy question…making other people happy!! As Josie says, “We do this to make other kids happy. I know how hard it is to be in the hospital so I want to help them too.”
We can’t change the medical outcome but we can change how they feel when they are going through this journey. You can’t believe how rewarding it feels to know that you put your heart and soul into doing something for someone else that hopefully makes a difference in his or her life. Every room we do we put ourselves into their shoes for a moment. We do our best to anticipate what they would want or what would bring joy to them.
When we get the theme of the room we try to do the best we can to make it perfect for them. You would think after doing over 500 plus rooms it would be redundant but instead we try to make each room better and more personalized. Making someone else happy fuels us. Hopefully that person is the patient, but also the family. Being in the hospital is so stressful for the whole family.
We are one of the few people who walk into the room and can concentrate on the person not the medical diagnosis. We get to recognize them and their interests. The family gets to be reminded of theperson not the condition.
The other part that fuels us is the excitement that it brings to the medical staff. You almost see them invigorated. It is so much fun to watch them and their reactions when they are watching a room reveal for one of their patients that they clearly have compassion for. It is a gift to us to make to make others feel special.
Charity Matters: When do you know you have made a difference?
Jennifer Hull: There is an interesting thing that happens in our group. It isn’t only the patients and families that we affect. Many times it is the volunteers or vendors that we see affected by our work. It is so much fun to go into Target and the cashiers are all excited to see what rooms we are shopping for. It is so rewarding to see the change in our volunteers when they come to help.
Witnessing the love and compassion that kids and teens give to patients is one of the best gifts in my life. We don’t give them enough freedom or opportunities to give to others in a meaningful way. Giving them a positive experience serving others at young age while hopefully help them remember that feeling when they are adults and they will find a cause that they can make an impact giving to as adults.
Charity Matters: Last question before we end this fairy tale, tell us what success you have had?
Jennifer Hull: Our success isn’t measurable. Success for us is determined by the about of love and compassion we are able to spread to our patients, families, staff, volunteers and vendors. It is the ability to spread hope and happiness. Our success is based on helping and serving others.
Now that is happily ever after….if ever I have heard one.
“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.”
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.
One of our dear friends lives in Athens, Greece and recently introduced me to a very special lady, Maria Kostaki. As most of you know the Syrian refugee crisis has had an enormous impact on Greece. While we all watch the news here in America with horror, many in Greece watch in person while children are orphaned and abandoned.
So many in Greece can barely take care of themselves with the financial crisis and feel helpless, but not Maria, she decided to act.
She did so in the most beautiful of ways, Maria wrote a children’s book, called When Clouds Embrace. Her mission to use her gifts, as an author, to help those in need. I had the opportunity to speak to Maria recently and here is our inspiring conversation, from this remarkable woman, who can no longer sit by and watch, but rather, who is using her talent to inspire, educate, and help these abandoned children.
Charity Matters: What was the moment you knew you needed to act?
Maria: The day that I woke up to the photograph that shocked the entire world. It was of the three-year-old Syrian boy washed ashore on a beach of Lesvos, an island that I visited many times for vacation. He was dead.
Charity Matters: What fuels you to keep doing this work?
Maria:The feeling that one day, I will make a difference, and maybe inspire others to do the same. I know that selling books won’t save the world, but I’m a writer, that is what I do, that is what I have to offer. I hope that people around me will realize that any help and kindness we can spare, on any level, can have an impact on the lives of others.
Charity Matters: When do you know you have made a difference?
Maria: I like to believe that I already have. I’ve raised awareness in my own circle, few people would have known that there are hundreds, maybe even thousands of kids, alone, without shelter, without access to food and clothes, without a grown up hand to hold, roaming a country, foreign to them. It’s terrifying, devastating, if you think about it.
Charity Matters: Tell us what success you have had? What has your impact been?
A large part of the funds for the publication of “When Clouds Embrace” was actually crowdfunded. I had contributions from all over the world, from people I did not know, from friends who I know are in tight financial spot here in crisis-stricken Greece. It was a humbling experience. But it was just the beginning. Success will be success when I donate the all of the proceeds to Giving for Greece, an organization that is doing wonderful work for unaccompanied minors.
But the first sign of success was seeing the “temporarily out of stock” alert for “When Clouds Embrace” on Amazon. It was its publication day.
As Pablo Picasso said, ” The meaning of life is to find your gift. The purpose of life is to give it away.” Thank you Maria for reminding us that there are so many ways we can help, support and inspire one another.
They say all good things must come to an end. My question is when do you know? This month I am saying goodbye to two separate non-profit boards that I have had the privilege of serving on for the past six years. I’m not sure where the time went, but it appears my time has come.
The beauty of serving is that like life, our service is constantly changing as we do. As a child, I saved pennies for others because my teacher would give us candy if we gave to those in need….my earliest memories of giving were more to myself. As a teen, I worked at the Boys and Girls Club each summer. In college, I read to under-served students with my sorority sisters, in South Tucson. As a young mother, I volunteered and raised funds to build a new children’s museum in our town. The service always seemed to fit the season of my life.
These past few years, my service has come in the form of leadership. Six years ago, when one of the organizations approached me about joining their board, I was surprised, it was unexpected and yet, I was thrilled because I love their work and mission in navigating young men out of poverty and into college. During the past six years, I have witnessed incredible change, growth and seen hundreds of young men head off to college. A privilege to witness and serve.
The second board I will be leaving is my alma mater, my all girls Catholic high school. True confession, they did try to kick me out more than a few times when I was in high school, so I do receive enormous joy in both the sweet irony and in giving back to the school that taught me actions not words.
Most of all, I will truly miss the incredible people who have made both of these experiences ones I will always treasure. The time has come and now a new season has arrived. What it will bring, I have no idea…but I know I will be ready for whatever is calling.
Telling a magical Christmas story in May, might sound unusual but it is so beautiful, it simply can’t wait until December and since May is National Foster Care Month it seemed only fitting to share it now. A few weeks ago a woman from Maine reached out to me, via email, to tell me about her incredible friend, Janalee Moquin. Like most non-profit founders, Janalee truly did not want any attention on herself, said her girlfriend, via email. However, her friend was undeterred in wanting Janalee’s story told and about her amazing work with children aging out of foster care. I am so glad she did…
There is no place like home and for thousands of foster care children each year, who age out of foster care, they sadly do not know that feeling. Janalee Moquin was determined to impact and change that in any way she could. She told me, “I had a difficult childhood, and I know what its like to feel like you have no one. I knew I wanted to help that child, that I was.”
Janalee went on to say that the most magical moments and happiest memories of her childhood were at a Christmas tree festival in Massachusetts, where she grew up. Thirteen years ago when Janalee moved to York, Maine she decided to re-create the holiday tree decorating festival in her new town. She went out and bought 32 trees and asked friends to compete in decorating them, in hopes that people would come together, buy tickets, feeling the spirit of the season and the funds would go in some way to support children in foster care.
Well the first year, while her vision was there, the rest of the town didn’t really see it. The years that followed, little by little the idea caught on. The tree festival grew and grew and so did Janalee’s passion for directing the increasing funds into A Place Called H.O.M.E., which stands for Having Opportunity Means Everything.
Janalee worked with social workers to find these young foster care children who were told at age 18, goodbye. She knew they needed support, love, help, mentoring and just basic kindnesses that we take for granted. Janalee and her group of volunteers began asking these young adults what they needed, what would mean the world to them. Their answers, “birthday cards with our name on them, a care package that has something I like, that feels like someone knows me.” The simplest request.
Today, thousands of people come from over five states to attend the now four-day long tree festival. The people of York have tree decorating rooms set up all year in their homes for the big event. Janalee is a foster parent to a 16-year-old boy and knows that she has recreated her childhood holiday magic for her community, for thousands of children and more importantly for the foster care children her work supports.
She said, “I know I have made a difference when I see a photo of a foster care child smiling holding their birthday card and when I can witness a communities joy.” I asked Janalee, what fuels you to keep doing this work? Her answer, ” This is what I was meant to do and why I am on this planet.”
This upcoming weekend we will celebrate our moms for Mother’s Day. Last week, I had an incredible conversation with two inspiring mothers, who have taken their journey into motherhood and transformed the lives of hundreds of young mothers in the foster care system. These amazing women founded Alliance of Moms, a non-profit organization whose mission is to break the inter-generational cycle of babies born to teens in foster care.
Yasmine Delawari Johnson and Jules Leyser were both pregnant in 2012, along with three other girlfriends (Danika Charity, Emily Lynch and Kelly Zajfen) all at the same time. For some it was their first child, for others their second or third but the girlfriends all experienced a profound change in becoming mothers. Together they were determined to use that shift in each of them to help other mothers, the most at risk, those in the foster care system.
Yasmine:I was pregnant with my son, having a child makes your heart burst wide open and makes you see everything every differently.I wanted a part of motherhood to be looking out for all children, not just our own. From my previous work withThe Alliance for Children’s Rights,I knew we needed to explore more volunteer opportunities for children’s rights.
Jules: My mother grew up in foster care and was a teen parent at 17. I understood the need to break the cycle, 66% of babies born into foster care become teen moms. I also understood that my child had won a lottery that he didn’t even knew he entered, just by luck. We needed to help support all mothers.
Tell us about when you knew, your work had made a difference?
Yasmine: In July 2014, five of us began exploring this idea of creating an auxiliary group to support The Alliance for Children’s Rights but more than that we wanted a mother to mother, community to community event. Six weeks later, we had our first program, Raising Baby, inviting 70 youth in foster care and their children for a day of fun, educational parenting workshops. We were determined to be there for these moms, when so many have let them down.
While we set out to serve these young women in foster care, our members were also impacted by serving. The women we serve have changed all of our lives for the better because regardless of your circumstances, we all walk away stronger knowing that we all struggle as mothers.
What fuels you to keep doing this work?
Jules: Having a hands on relationship with our pregnant girls and seeing them on an upward trajectory. Knowing that these young mothers are now talking and singing to their unborn children, or reading to their children at bedtime, creating family rituals, and using the little things that we teach them, which have a big impact on their children.
These young parents are motivated to change their lives and their children’s’ and more than that, it is seeing people being kind.
Yasmine: My dream would be to create something sustainable and scalable that we could take outside of Los Angeles and to other communities of mothers across the country. We know and see the value of creating community and a village for mothers.
Jules: My dream would also be to see our program expand to other places and perhaps to help all teen moms. The real dream would be to have the public start seeing these young moms in a different way…with humanity and empathy.
As Yasmine and Jules both said, “We are all different and yet we are all the same. We all want the best for our children, we all get overwhelmed, stressed, worried that we are not doing the right thing. We are all learning about ourselves and our children as we struggle to do our best.”
Over 600 members, hundreds of families and young mothers served and countless lives forever changed by a group of mothers who know what it is to share the love, create an alliance and to inspire us all.
I was at the bookstore recently and came across a book entitled, If Nuns Ruled The World. I thumbed through it because I have an aunt I adore, who is a Sister of the Holy Child. Like most nuns that I have met, my aunt is an exceptional human being. Intrigued by the book title, I flipped through the pages and found ten nuns who were profiled for having done extraordinary things and one in particular caught my eye. Her name is Sr. Tesa Fitzgerald.
Tesa Fitzgerald was born into an Irish Catholic family on Long Island and surprised them all when she entered the convent after graduating from high school. Sr. Tesa worked in Catholic schools as a teacher and ultimately a principal, until her life had a change of direction.
Another nun, Sister Elaine Roulet, had created a program that helped incarcerated women to stay with their newborn children until they were at least one year old. Sister Elaine reached out for help with the problem.
Learning that there are approximately 150,000 women incarcerated nationwide, Sister Tesa wondered what happened to these women’s’ children? So, in 1985 Sister Tesa answered Sister Elaine’s prayer by becoming a foster parent and turned a convent into a home for six children, with the goal of maintaining the bond between mothers in prison and their children.
In 1992, she created Hour Children as a nonprofit to offer supportive services to other children of incarcerated mothers and to the mothers themselves. She named it to reflect the hour of the mother’s arrest, the hour visit allowed to the children and the hour of her release.
Today, Hour Children oversees three apartment buildings, three thrift stores, a day care center, an after school program, a group home, a food program, a mentoring program and four communal homes, all while continuing to work with women during their incarceration. Sister Tesa has been recognized by the White House, received the Opus Prize and of course was featured in the book, If Nuns Ruled the World……which just makes me wonder what our world would be like?
“People want to feel what they do makes a difference.”
On Wednesday, I shared the inspiring story of non-profit activist, author, CEO, leader, and recipient of the Presidential Medal of Freedom , Frances Hesslebein. Her life and example of being a servant leader was so inspiring that I needed to share more.
In speaking to Frances and my mutual friend, Mike Stallard, he told me that his favorite quote of hers is,
“To serve is to live.”
Today, Frances is 102 and still inspiring others through her work and life.
Late February and early March may be a gloomy time of the year in most parts of the country, but if there is one thing that brightens all of our lives it is the beginning of Girl Scout cookie season. Half of the year I suffer from a mild depression when my freezer no longer contains thin mints and don’t get me started on how much I love tagalongs. This year, there is something really special about all of this, its the 100th Anniversary of the Girl Scout cookie and their sales. Who knew a cookie could make such a difference in all of our lives?
The other day with my cookie order on my mind, I had a great conversation with a friend, who told me I needed to meet one of his dear friends, an amazing woman named Frances Hesselbein. My friend, author Mike Stallard, began describing this incredible woman who transformed the Girl Scouts and so many more lives. I knew I needed to know more about this amazing woman and how she has used her life to inspire so many others…
Frances, the mother of one son, went from Girl Scout troop leader to CEO of the Girl Scouts and was accredited with turning the organization around. She grew the organization to over 2,25 million girls and had a volunteer workforce of 780,000 during her time. In 1998 she was awarded the Presidential Medal of Freedom for her work with the Girl Scouts.
In November, 2011 she told Forbes Magazine, “When I left the Girl Scouts in 1990, it was the largest organization for girls and women in the world. Six weeks later I found myself CEO of the Drucker Foundation, with no money, no staff and just a powerful vision. Peter encouraged us to focus on the type of change that will determine whether or not we are, all of us, a part of the future.”
Today the Girl Scouts is the world’s most successful organization dedicated to creating girl leaders with 3.2 million active members and over 59 million alumni! Truly nothing sweeter than using your life to make others better. Frances will be 102 in November.
As February comes to a close I wanted to make sure that the last post of the month was about the heart. As many of you know I became friends with a wonderful family, the Pages thorough my work at Childrens Hospital Los Angeles. They are an inspirational family and despite the adversity they have faced in light of their son’s congenital heart disease, they always find a way to turn a negative into something positive for someone else.
Some of you may remember Max, as young Darth Vadar in the infamous Volkswagen commercial a few years back. I received an email from Jennifer the other day about a new campaign Max is helping shine some light on, called Mended Little Hearts.
This inspiring organization began in 2004, when four heart patients came together in Boston to discuss their heart surgery experiences. Out of that meeting came the recognition to support these families of children born with heart defects and heart disease.
Today, Mended Little Hearts has over 10,000 members and over 80 Chapters in the U.S. and Mexico. Proof that one heart can heal so many others.
“If someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research. We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease. Out of our heartache, there is hope….”
The words above were sent to me five years ago from non-profit founder, mother and champion for families dealing with congenital heart disease, Francie Paul. I spoke with Francie and board chair of Saving Tiny Hearts, Larry Kluge, to see what has happened since they began this journey over a decade ago to bring awareness and research to Congenital heart disease .
CM: What do you want people to know about Congenital Heart Disease?
Francie: I want people to know that twice as many children die from heart disease versus all pediatric cancers combined and that cancer receives five times the funding for research.
Larry: Over a million children are born each year with congenital heart disease.
CM: What is your goal at Saving Tiny Hearts?
Francie: Our goal is to fund a project that will not only save our son’s life but to ensure that no one else should ever have to go through this.
Larry: We have been able to fund over 30 research projects that keep getting us closer to making this a dream a reality. We want to find the answer that makes Saving Tiny Hearts obsolete.
CM: What keeps you going?
Larry: The love, passion and support of our community is extraordinary and the researchers we support.
Francie: People carry you through your darkest days and they have made our journey all the more humbling. It is the heart, hope and passion of our team. We are all a part of this.
As Francie said, five years ago “Out of our heartache there is hope.”
February is heart month. Over the years, I have interviewed so many people with such heart warming stories, but one that has truly touched me is the story of the Paul family and their journey as parents of a child living with congenital heart disease.
You may remember them, because they are extraordinary people who took their pain and turned it into a non-profit foundation called Saving Tiny Hearts.
When I first interviewed Francie Paul five years ago she sent me this note, which I wanted to share here today. On friday, I will tell you what the Paul Family is doing now.
Thank YOU for your beautiful post– we are extremely honored to have Saving tiny Hearts featured.
We did have high profile malpractice attorneys at our doorstep…practically before we were out of the hospital from Joshua’s firstheart surgery…it wasn’t who we were…our life’s mission came out of the greatest need for medicine and science into heart defects to catch up to support all children, like our little love, afflicted with heart defects.
Starting the Saving tiny Hearts Society began before our Joshua’s second heart surgery (- he has had 3) at 3 months old, after pediatric heart surgeons told us that there was a desperate need to fund research, that young hungry scientists were being turned down for government funding because they didn’t have enough monies to beef up their revolutionary proposals….which is where we would come in, to provide the seed money for it all.
Most people don’t realize that so many babies and children do not survive because of lack of research to save them. We didn’t know that it was the #1 birth defect in the world and the #1 cause of birth defect related deaths….we didn’t know that it could happen to our baby.
Someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research. We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease. Out of our heartache, there is hope….
I don’t know if you had seen the movie ‘Something the Lord Made’ but it was an HBO movie about one of the very first heart surgeries ever performed, the Blalock-Taussig Shunt (-BT Shunt). It was the very first successful heart surgery that began with a blue baby as doctors were afraid to touch the heart and felt that of these babies wouldn’t live otherwise, so they would try this most revolutionary procedure on a baby first. Nearly 60 years later,at 4 days old, after our baby was stabilized, he had a Blalock-Taussig shunt.
We can’t thank you enough for sharing our story; it has truly been a humbling journey for us and in the greatest of heartache, we have seen the very best in friends. Can’t wait to read more Charity Matters and see all of the amazing things that are happening because of you.