Cincinnati Children’s Hospital Medical Center
It has been nearly four decades since Judy (and her husband, Dave) Albert first became one of the Spina Bifida Coalition of Cincinnati’s earliest volunteers. Back in the 1980s, when the Coalition was still very much a ‘grass roots’ organization, its address was her home and the phone rang in her house.
“She personally answered every request for help and deeply connected with those she assisted and worked with,” Diane Burns, SBCC program manager told me. “She led our strategic growth to a small, but effective, professionally staffed non-profit situated in an accessible office building, with an active social media and internet presence, successful partnerships with many other local disability groups, and perhaps most importantly, a close relationship with the interdisciplinary Center for Spina Bifida Care at Cincinnati Children’s Hospital Medical Center. Judy is one very significant reason that local support exists for more than 300 babies, children, teenagers, and adults in our community who live with spina bifida.”
Whether she is serving in a Board or committee capacity, volunteering at SBCC activities, recruiting other volunteers, offering ideas for strategic initiatives, or even serving as Mrs. Claus at the annual family holiday party, Judy’s ongoing support is felt in just about every aspect of the organization’s work. Judy even initiated SBCC’s key sustaining fundraiser – the Walk & Roll, an event that was quickly duplicated by the national Spina Bifida Association, and one that has raised around $800,000 since its inception.
Behind the passion of many driven volunteers is a deeply rooted relationship with the cause, one stemming from a very personal journey in life. And Judy is among them.
The year was 1979 when Tim came into this world, the second of three Albert sons. Judy shared her story, “My obstetrician told us he would never break a record in the 100-yard dash but he would walk. He further added that Tim would never have to go to war which I thought at the time was a strange thing to say to us. Later while he was in the hospital a doctor told us he might not walk which contradicted what we had previously been told but he proved them wrong.”
The Alberts were given a book about Spina Bifida describing it as a ‘very serious birth defect’, scary words for any parent. “A parent from the organization told us that Tim probably wouldn’t be affected by everything in the book but to just enjoy him like any other baby. This was the best advice we could have received. As an infant we treated him like our other son, he just had many more doctor appointments,” Judy told me.
Growing up, Tim attended St. James Grade School and LaSalle High School. He played soccer in grade school and was on the swim team at LaSalle. He has worked at Cincinnati Children’s Hospital Medical Center since 2001, currently in the Pathology Department as a histology technician. Tim purchased his own condo in 2005 and has lived on his own since that time.
His seizure disorder and other issues relating to his spina bifida have meant needing occasional assistance from his parents; however, Tim purchased his own condo in 2005 and has lived on his own since that time. He likes to work out and plays wheelchair football. He walks with braces and has a wheelchair when he needs to walk long distances.
“He never wanted to be treated differently always determined to make it on his own,” said Judy. “Tim has a great sense of humor always making jokes. We are very fortunate to have Tim as our son and admire him for all of the challenges he has overcome.”
From Personal Success To Giving Back
“Raising a child with spina bifida involves commitment, patience, and perseverance, as well as a thorough knowledge of orthopedics, neurosurgery, urology, and a full breadth of therapies, a hefty dose of psychology and an understanding of developmental milestones, Judy not only nurtured her son Tim, but also her two other sons, while working full-time as a CPA and actively participating at her church, St. James White Oak and children’s schools. Judy quickly turned her focus to those in our community who needed to understand what she had learned – how to help children born with spina bifida and their families to thrive,” Diane shared.
“My mother is the kindest woman I know, and is willing to selflessly help anyone in need. She has shown me through example that kindness truly goes a long way,” said Dennis Albert.
Danielle Jones was working at Cincinnati Children’s Hospital Medical Center when we first met. I remember us walking through the hallways, into the waiting rooms, and even further into the patient rooms where young, innocent girls and boys were resting nervously with their families before or after procedures.
One thing that strikes you when you visit that mammoth, internationally acclaimed medical facility where parents travel across continents and states to spend days, weeks and months, is how, despite the seriousness of their, the hospital team goes to great lengths to uplift spirits through imagery, therapy dogs, entertainers, and volunteers.
What I remember most about Danielle from those days is her smile. She always made us feel welcome. She put the families of patients at ease. She was someone, I recalled thinking, who clearly enjoyed life.
And so, when I learned of her own personal story – the one she shares with her husband Chris, it did not surprise me that theirs – despite deep tragedies, challenges, and life tests – is a story of love, fortitude, courage, and generosity.
Remember those wedding vows? The ones that include for better or for worse, in sickness and in health, for richer or for poorer? Yes, they came to know the meaning of those vows sooner rather than later.
Within the first few years of marriage, they came face-to-face with the unemployment, a diagnosis of multiple sclerosis, a cancer scare, the loss of a loved one, and the devastating loss of their newborn son. Through it all they were steadfast in their love and their faith, and made a decision to create good from the bad.
They tell their story in a book, “As Sure as Tomorrow Comes”, that benefits the Angel Baby Network which they founded to help other parents.
Please learn more below.
Lisa: Please tell us a little about your love story.
Danielle and Chris: We met in 2006 working on our church’s first and only single’s conference. Chris was the only male on the planning committee and he was the only single male in the church in my age range. We started off by flirting with each other and we ended up deciding to hang out one weekend. The weekend after that we had our first date and we never stopped going out with each other. We knew we were meant to be together because we always had fun together and we enjoyed each other’s company.
Lisa: What are the greatest strengths you see in each other?
Danielle: The greatest strengths that I see in Chris are his ability to always be true to himself others. Chris is unapologetically himself, which means he’s always honest and he’ll always tell you what he thinks about something or someone. I also admire his perseverance. He never gives up and he always bounces back from whatever life throws at him.
Chris: Danielle has great writing skills. She was able to recall most of the events that happened in our lives like they’d happened just yesterday when she was writing our book. She also has great people skills and can get along with anyone. I admire Danielle’s tenacity and her ability to smile even when we are going through hard times.
Lisa: Unemployment. A car accident. A terrifying medical diagnosis. The loss of a loved one. The death of your 10-day-old son, Junior. Any one of those life circumstances would be a lot for someone to process and live through. What lessons have those experiences taught you about your own strength, and about life?
Danielle: Our experiences have taught us that with our faith in God and with our love for each other we can make it through anything. Chris always says that at some point in life, everyone is going to get rained on, but they get to decide how they are going to go through it and I always say that life is 10 percent of what happens to you and the other 90 percent is how you respond to it. We’ve made a decision to keep on going, no matter how hard life has gotten. And we’ve decided to help other people along the way.
Lisa: Please tell us about the Angel Baby Network and how it has touched other parents.
Danielle: A few months after our son passed away, I started Angel Baby Network as a way to help other families who had also lost children. I remember feeling like I was all alone. I knew that other families had to be feeling the same way and I wanted to do something to help them. Angel Baby Network gives bereaved parents a way to get together and be around other families who are just like them. We give them an opportunity to share their grief with each other and we empower each other to keep the memories of our children alive.
The other day I received an email from a friend, Christy Berning, that was sent to a large number of us. It told the story of a little boy and his family in an unfamiliar city living temporarily in our Cincinnati Children’s Hospital Medical Center as they battle health issues no little boy should have to face. They are on the waiting list for the Ronald McDonald House, which is about 20 days+.
Braylon – like Christy’s neice – has Dandy Walker Syndrome, a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it that causes seizures, physical and cognitive delays and many scary surgeries and hospital visits like the one he is experiencing now.
Doctors suspect that he may have a defect in his T-cells and are running some tests to determine whether he would be a candidate for a bone marrow transplant. If this is the case, it is a very long six-month process where they would completely wipe out his immune system starting with chemotherapy and rebuild it from scratch.
He would need to wait, however, until they could get his infection under control, because he is currently not stable enough to undergo the treatments. Additionally, Braylon has some major GI issues, and is currently connected to a central line for feeding. Prayers that they can get his feeding better to remove the line, since these lines carry with them a very high risk of infection.
I have been to our Children’s Hospital so many times. It is an incredible place where hallways are lined with bright colors and on any given day you may see therapy dogs or clowns or other volunteers roaming to take the seriousness away even for just a few moments.
Families like Braylon’s come from around the globe for the opportunity to seek medical treatment from the very best. Still, all in all, it can be a lonely journey with long hours of waiting, worrying, wondering and hoping.
So people like Christy who take it upon themselves to reach out and organize efforts to build a community around a family living at the bedside of their child are so incredibly meaningful. Christy asked us to write a card, contribute to a welcome basket or send another token gift, cook a meal, or just keep the family in our thoughts and prayers.
I’ll be sending along a card and Mylar balloons.
Christy and I had lunch this week, and we talked about how acts of kindness have such broad spread impact not only on the receiver but also on the giver. It is such a powerful gift we can give others and ourselves. And it has a way of spreading. I am in awe of Christy’s beautiful heart, and am inspired to give kindness to others.
There is something so powerful as to evoke raw human emotions. That something is a photograph, a reflection of the human spirit that can change how you see the world around you. And give you an everlasting gift of loved ones and experiences…and life.
I’ve written before about the work of internationally acclaimed photographer Rick Guidotti (founder of Positive Exposure), who I came to know and admire through my work with the Cincinnati ReelAbilities Film Festival. Through Rick’s lens, the world has come to see beauty in difference and difference as just another quality that makes us uniquely human.
Giving Flashes Of Hope To Kids
Flashes of Hope, is all about using photography to change the way children who have cancer and other life threatening illness see themselves (and raise money
for pediatric cancer research).
An annual report describes its purpose beautifully: “The images help the children see themselves full of strength and determination: cancer is not going to define who they are. But for too many families, it is the last photograph they have of their child. All of these children deserve a lifetime of memories and research is the only way to save more lives.”
Wow, talk about impact. I learned about Flashes of Hope when I saw some Facebook posts from a photographer I worked with years ago, Helen Adams. She is one of the founders and co-directors of the local chapter that works with Cincinnati Children’s Hospital Medical Center.
A visual artist who has spent over thirty years capturing the human spirit, Helen has been called upon several times by people wanting to have forever portraits of a loved one with little time remaining. “It is the greatest privilege to be asked to participate in that way, to give them such a gift,” she told me.
Ironically, it was when Helen was experiencing the wrath of cancer through her husband’s two biopsies and a client learning of a leukemia diagnosis that she found Flashes of Hope, based in Cleveland.
“When you are struggling with your own life, the best thing you can do is to be of service to other people,” Helen said.
She reached out to Mark Bealer and Vicky Daniels of Studio 66, and together they started the Cincinnati Chapter.
In their words
Mark, Vickie and Helen share on their Facebook page why they do what they do…
No matter how tired, stressed or busy the 3 of us are as photographers and entrepreneurs, parents and small business owners; We roll up to the hospital parking lot, walk in and all of that washes away while we bear witness to the struggles of the innocent children who many times live their life in the hospital, away from
their home cities and friends!
The children become our heroes, as we watch them sacrifice how they may feel that day, and provide gifts of pictures for their family. The kids seem to transcend into another dimension of selflessness as they smile, pose and energize the shoot, while at the same time they ignore their own limitations of perceived health and beauty.
While we may not currently have a personal connection to cancer, our motivation stems from a deep compassion for any child that suffers undue pain and misery. And, the Flashes Of Hope organization is a wonderful choice for us, providing not only the avenue of the aesthetic photograph, but also tangible relief of money for research for those we have come to consider as our Cincinnati Chapter kids.
Currently their Cincinnati Chapter has 20 volunteer photographers who give of their time capturing images of 8 to 15 kids a month at Children’s Hospital. Mitchell’s Hair Salon provides hair styling for those with hair and make up.
You can help by giving of your time or making a donation. To find out more, visit www.flashesofhope.org and click on ‘support’.
To see more of their photographs, please like them on Facebook.
When I was hired by the Cincinnati ReelAbilities Film Festival (organized by Living Arrangements for the Developmentally Disabled and presented by Macy’s) late summer of 2014, much of Greater Cincinnati had never heard of it; and few people who I reached out to had any idea of the scope of the event or its value to our community – including me, admittedly. Even those who worked for the nonprofit host agencies did not realize the magnitude of what was to unfold.
People experiencing a disability or cognitive, genetic, physical and behavioral difference are often misunderstood. They are portrayed in photos and sometimes news stories as ‘less than’ normal or super human just by virtue of their own being. They are often not included, or at least not to the extent that they are people first with interests, hopes, dreams, talents, and even bad days, just like everybody else. Yet ‘they’ are about 20% of our population. And ‘they’ are the only minority population in which all people will be counted among them at some point in their lives.
The overarching goal of LADD and ReelAbilities in hiring me to serve as the director of public relations and communications was for me to support the unrelenting drive of determined volunteers and staff organizing the events by being a catalyst for change – to bring the community together in support of not only an event but a cause so powerful as to have impact on each and every one of us in a direct or indirect way. I wanted to get people in this region talking to each other and realizing that inclusion and togetherness is not about ‘other people’, it is about themselves and each other. I wanted to get people excited about ReelAbilities as a world class film festival, and come out to support and learn from it. The challenge was to do all of this with a very limited budget including for my own time, but I was up for the challenge as the cause is something very important to me.
For eight days beginning February 27, Greater Cincinnati was transformed into a film screening mecca with out-of-town celebrities helping Cincinnati explore our differences, and our shared humanity. Internationally acclaimed photographer Rick Guidotti; Michigan Supreme Court Justice Richard Bernstein; Project Runway fan favorite Justin LeBlanc; Cincinnati icons Ted Kremer, Drew Lachey, Nick and Nina Clooney, Dave Parker and Ken Anderson; former snowboarding champion Kevin Pearce; and actors Danny Woodburn, Kurt Yaeger, Daryl ‘Chill’ Mitchell, John Lawson, David DeSanctis (from Where Hope Grows), Jesus Sanchez-Velez (from Stand Clear of the Closing Doors); veterans SSG Travis Mills and Michael Schlitz; and Steve Wampler, who climbed El Capitan, where just some of the big name personalities who came to Cincinnati to be part of ReelAbilities. Academy Award Winning Actress Marlee Matlin was our keynote speaker for our Kick Off Celebration Luncheon that hosted hundreds.
The films of ReelAbilities were selected from some 500 plus submitted for jurying, many of them with wide international acclaim and awards to their name. Their common thread was that they celebrated the lives and stories of people experiencing disability. Many were shown with the film actors/subjects as special guests; and all screenings included a thought provoking discussion at the end.
I saw and still do see ReelAbilities as an opportunity to open dialogue and doors about topics that, for the most part, have been barricaded from our conversations – or at least in productive ways out of discomfort or lack of interest or personal connection.
There were so many strategies that I put into place (with help from wonderful volunteers and staff) to reach out to our community and pull people in through their personal stories and connections – their differences, and their shared humanity. And, in the end, it all came together to create a community that supported the film festival beyond our wildest dreams in classrooms, board rooms, businesses, entertainment venues, stores, nonprofits, and universities. Nearly 4500 people attended our events, with numerous film screenings having sold out.
The honest questions that were asked, the open answers that were shared, and the comments afterward from film goers told all of us that others grew from it too with expanded and even new perspectives.
There were so many people whose words and actions touched me in meaningful ways that it has been difficult to find the right words to capture its impact on me.
There was Kevin Pearce who took us into his life and shared his family tradition with all of us, ringing a Tibetan singing bowl to facilitate awareness of the moment – even at our formal Mingle with the Stars Gala. And, speaking of the Gala, anytime you have comedian actors in a room together and give them center stage to improvise, laughter is bound to follow. That was the genius idea (and somewhat brave too) of Festival Managing Director Susan Brownknight.
I remember the first time I met Richard Bernstein. He was so filled with genuine flattery of everyone he met. That, I came to learn quickly, is just his way. It is a gift and something I came to treasure about being around him.
We brought our VIPs to the Seacrest Studios at Cincinnati Children’s Hospital Medical Center where kids could interact with them. It is there where I saw the infectious laughter of Danny Woodburn, Daryl ‘Chill’ Mitchell and John Lawson banter between each other; and again when Steve and Elizabeth Wampler sat side-by-side. Steve shared this message with hospital patients, “Don’t let anyone tell you, no, you can’t do that. Anything is possible.”
Justin LeBlanc promoted literacy by reading a book about inclusion to an entire gymnasium filled with school children; promoted creativity by helping students who are deaf to design and show fashions; and promoted abilities by speaking about his own personal story. Young students at Ohio Valley Voices also got to ask Justin lots of questions – like ‘When is your birthday?’, ‘What is your favorite color?’ and ‘Do you have a dog?’
While here, SSG Travis Mills , one of five surviving quadruple amputee veterans from the wars in Iraq and Afghanistan, met for the very first time a critical care doctor who provided medical care after his 2012 injury during his air care transport from Kandahar to Bagram. Together we took them to tour UC Health’s Center for Sustainment of Trauma and Readiness or C-STARS where Major Dr. Laurae Rettig was trained. I’ll always remember Travis’ wicked sense of humor…and his rotating hand that he can make go round and round and round.
I always welcome Rick Guidotti’s bear hug. The lens from which he sees the world has opened eye across the globe to see the gift of each individual and the beauty in difference.
I treasured all of the time I got to spend with my friends, Danny Woodburn, and his wife, Amy Buchwald. They are two incredible people who I look up to as examples of role models when it comes to integrity and perseverance. Equaled with their talent is their fearlessness when it comes to standing up for what they believe in.
ReelAbilities gave me the opportunity to get to know and admire John Lawson, an encourager and leader, with a gift for bringing out the best in others.
Then there is the Festival Chair Kathleen Cail, Co-Chairs Sara Bitter and Kara Ayers; Managing Director Susan Brownknight; staff team – Jesse, Hannah, Molly, and Jen; and all of the committee volunteers for whom I have so much respect. They are such an awesome group of passionate, hard working, and dedicated people without whom this would not have been possible.
The Festival was about people coming together, standing up for and embracing eachother. It was about opening eyes and minds to see beyond people’s differences to what we all share – our humanity. I celebrate LADD for having the vision, foresight, courage and strength to create and organize such a community changing event. I am especially in awe of Susan Brownknight as our leader.
In her luncheon speech, Marlee Matlin looked out into the audience and shared, “We need to keep opening doors when people want them shut. We need to shine the light on ignorance when people want to keep us in the dark. And we need to make noise when they want to keep us quiet. But most of all, we need to keep on being ourselves, follow your heart and in the end accommodation will happen. We are the ones who can make it happen.”
Yes, Marlee, you are right we are. Let’s make our voices be heard!