Every parent wants the best for their child, so finding out something is wrong when baby arrives can be incredibly scary. It often takes a community of loving support and the strength of others to help families cope.
Here’s one story of how Shriners Hospitals for Children helped inspire a young girl and her family to turn her difficult reality into an utterly inspiring life.
Madelyn, now 19, was born 10 weeks early. Doctors told her parents that she was beautiful, healthy, tiny — and was born without her left arm.
Madelyn’s journey with Shriners Hospitals for Children began with her first visit to the St. Louis location when she was just 3 months old. Throughout her childhood, Madelyn used prosthetics, mainly for balance, and to help with various activities.
Occupational therapists at the hospital helped Madelyn learn to function and interact in the world. As she grew older, Madelyn began using her prosthetics less often, and by middle school, she opted to stop using them.
Madelyn has always devoted herself to advocating and educating. She loves to make YouTube videos showing how to accomplish things using only one arm. At Ability Awareness Week, a program of St. Louis-area elementary schools, Madelyn shares her story and explains how Shriners Hospitals for Children changed her life. And drawing from her own experiences of being bullied for having only one arm, Madelyn incorporates anti-bullying themes into her presentations.
Madelyn is currently a student at Maryville University in St. Louis, where she is active in student activities and made the dean’s list for academic achievement her first two semesters.
To help express their life-changing care, Shriners Hospitals for Children shared an interview with Madelyn and her mom, Melissa.
These questions were asked of Melissa, Madelyn’s mom:
Can you tell us what it was like learning your child was born without a limb?
We learned a few hours after Madelyn was born, as she was born 10 weeks premature and whisked away to the NICU. Honestly, we were still numb from the early delivery, but thankful to know Madelyn was a healthy little girl. The moment the doctor told us Madelyn was born without her left arm, we actually made a slight joke about how at least it was her left arm, as I had worried my left-handed husband would pass on the gene and be the one who would have to teach our children how to write — and he has horrible handwriting. After the initial shock, there was uncertainty of what this would mean for Madelyn’s development and how she would do things. But there was also the combined concern of how tiny she was, being born at just 3 pounds and 4 ounces.
How did you find out about Shriners Hospitals for Children?
Madelyn was only a few days old, doing well, and was moved to the FICU. It was there we met her orthopedic doctor. He had been affiliated with Shriners Hospitals for Children in St. Louis and told us he was going to connect us with the hospital staff. He said Madelyn would need years of care and assistance with prosthetics and therapy and it was the best place for us, as there would be no cost to us. We had lived a few miles down the street from Shriners Hospitals for Children for years and had driven by many times, but had no idea what wonderful services they provide right here in our community.
Can you tell us about your first visit? What were your first impressions?
We received a welcome packet in the mail from Shriners Hospitals for Children before Madelyn even left the FICU and came home, telling us to contact them when we were ready to visit the hospital. We ended up visiting when Madelyn was 3 months old. We were in awe, trying to take in everything that was being shared with us. Everyone was genuinely so kind: the receptionist, Madelyn’s doctor, the nurses and prosthetist. As we left the hospital, a Shriner’s Lady (women who are related to a Shriner) handed me a crocheted white baby blanket for Madelyn. It was so pretty, and it brought tears to my eyes. I felt like we would be in good hands returning to the hospital. We were going to be ok; our little girl was going to be ok.
What do you think makes Shriners Hospitals for Children unique from other hospitals?
One-hundred percent it is the family environment. From the Shriners who greet you at the front desk, to the receptionist, prosthetists, doctors, nurses and other hospital staff. Everyone loves their job and loves helping the children. You are a person, not a number, and there is genuine care for the patients — the children, but also the family. It was helpful when Madelyn was younger especially; our appointments were purposely set to meet other families with upper limb differences and get an opportunity to connect, ask questions and see that we are not alone on this journey. We were also blessed to attend Hand Camp two years in a row after Madelyn started elementary school. Hand Camp was a significant turning point for Madelyn and our family. She got to hang out with kids much like her with an upper limb difference, but also the counselors were teenagers just like the campers and they showed them all the cool things they could do with one hand. Hand Camp resulted in forever friendships for many of us families.
Since Madelyn has been a patient for most of her life, can you share what your family’s experience at Shriners Hospitals for Children has been like over the years?
With the hospital literally down the street from us, it was a blessing that if we needed a new prosthetic, a quick fix or how-to questions for the occupational or physical therapists, we were able to get in right away and get Madelyn’s needs taken care of. This continued into high school as yearly checkups were needed to check a slight curvature in Madelyn’s spine that she had developed in her adolescence. She quickly became connected with the PR staff at the hospital after attending Hand Camp, and they worked with her on opportunities to tell her story. This has helped turn Madelyn into the person she is today: confident, well-spoken and determined to give back in any way she can. One of her deciding factors in staying close to home for college was the ability to continue to speak to schools throughout the year about limb differences and anti-bullying. She and her brother have collected and donated over 2,000 toys for the last 10 Christmases. I think the most impactful opportunity was connecting with her favorite red-headed occupational therapist at the hospital, as well as others through the years, and she has been adamant since her early teens that she was going to be an occupational therapist herself and specifically work with children. There are so many blessings that have come out of Shriners Hospitals for Children through the years — it is truly difficult to think of them all. We are beyond a doubt lucky that Madelyn’s first orthopaedic doctor connected us with this amazing hospital and the organization behind the hospital — the Shriners and their ladies.
What advice would you give other parents whose child has a limb difference?
When we come across parents with limb differences, I immediately ask if they have visited Shriners Hospitals for Children. If they have not, I share our wonderful experiences and talk about all the great benefits, and I encourage them to at least make one visit and ultimately get them connected with the hospital closest to their hometown. I also share what we did to help Madelyn be strong and successful physically. Shriners Hospitals for Children was all I really had, plus the therapists in Madelyn’s schools who helped us problem-solve, gave me words of encouragement and clarified the unknowns. I vowed to pay it forward and share everything I’ve learned through the years to help that parent who might be worried and assure them everything will work out.
These questions were asked of Madelyn:
What is your first memory of Shriners Hospitals for Children?
One of my first memories of Shriners was of my prosthetist — he always had the funniest ties on! The staff at Shriners Hospitals for Children is what makes the hospital unique from other hospitals, as they treat their patients like family. I also remember always receiving a toy or gift as we left the hospital. These visits made me happy to go to the hospital!
What kind of care has Shriners Hospitals for Children provided you with for the past 19 years?
The best. When I wanted to know how to do different daily tasks, I went to occupational therapy and worked with some of the best problem solvers. When I needed a new prosthetic to help with my independence every 12-18 months, I was able to get a new one very quickly. I also had medical staff who kept an eye on a slight curvature in my spine that started to develop due to being off-balance.
You’ve spent nearly your whole life as a patient of Shriners Hospitals for Children. If you could sum up your experience, what would you say?
That is has had a lasting impact on the person I am today. Without Shriners Hospitals for Children, I would lack the confidence I have, and I think I would struggle with some basic activities like tying my shoes and painting my nails. I will be forever grateful for the hospital staff and Shriners who have been brought into my life and who I call family. I have met some of the most kind, giving and empathic individuals along my journey who have become significant role models in my life. They have taught me the true meaning of giving back to others, and I hope to represent their mission as I continue in life.
How do you think Shriners Hospitals for Children has helped you the most?
By giving me the confidence I have today. Yes, most people think of Shriners Hospitals for Children and automatically go to the medical side of things, but the patient ambassador program has turned me into the person I am today. The ability to share my story with others has allowed me to be comfortable with who I am. Speaking at events, like the Kansas Shrine Bowl, brought me out of my shell, and I can positively say that I love public speaking! They have also allowed me to build connections in the community by allowing me to speak at Ability Awareness Days! These connections have opened up opportunities to be more involved in the limb loss community.
What do you think makes Shriners Hospitals for Children special?
To me, Shriners Hospitals for Children is so unique because they are more like a family than a hospital. You walk in, and the staff and doctors greet you with hugs. They dedicate their time to get to know who you are. They want to see you excel in all aspects of life!
What advice would you give other children who may be struggling with a limb difference?
I would tell others with a limb difference that anything is possible when you put your mind to it. Different tasks might frustrate you, but that is ok as long as you never give up. Never be scared to speak up and ask for help! You are beautifully unique — let others see the amazing things you can do!
Is there anything else you’d like to add?
I am not perfect by any means. I wake up some days and ask myself, “Why me? Why do I have one arm?” However, because of Shriners Hospitals for Children, these days are so much easier. I am reminded that I would not be the person I am today, dedicated to studying occupational therapy or knowing so many remarkable individuals, if I had been born with two arms!
Help improve the lives of children
Madelyn is just one of more than 1.4 million children helped by Shriners Hospitals for Children, and there are so many stories just like hers.
At Scentsy, we proudly support Shriners Hospitals for Children and their mission to improve the lives of children. We invite you to join us by purchasing the charitable cause warmer we designed in their honor, Love Is All You Need.
From Feb. 1, 2020, to July 31, 2020, $9.50 USD from the sale of each Love Is All You Need Warmer will be donated to Shriners Hospitals for Children in support of their vision to make the world a better place for children and families every day.
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