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Celebrating National Pediatric Transplant Week: A Journey of Hope and Gratitude

In our healthcare system, there are few events as profound and life changing as organ donation and transplantation. For families facing life or death as their child is listed for pediatric transplantation, the journey is both harrowing and filled with hope. It’s a journey that many organizations like Transplant Families and Donate Life America are honored to walk alongside families. This collaboration has brought about significant awareness and support through events like National Pediatric Transplant Week.

The Birth of National Pediatric Transplant Week

In 2018, when the organizers Melissa McQueen and Joseph Hillenburg of Transplant Families got to work with Donate Life America, National Pediatric Transplant Week was born to highlight this community’s very special journey. This dedicated week shines a spotlight on the unique challenges and triumphs of pediatric organ transplantation, raising awareness about the importance of organ donation for children in need.  Because of their size and complexity, children are often the most challenging group to match. Many of these children have congenital issues that they have valiantly been fighting since birth. Fighting every day of their life is the only reality they have known.  Until the day a donor says yes, and then everything changes.

Over the past six years, National Pediatric Transplant Week has become a beacon of hope, fostering community, support, and education for families navigating the complexities of pediatric transplantation. It’s a time for celebration, remembrance, and advocacy, honoring the resilience of young transplant recipients and their families. This event has also been honored by a Presidential proclamation over the past few years, honoring these young warriors and their family’s journey through the unimaginable.

A Personal Journey: From a Heart Transplant Recipient Family
Written by Melissa McQueen, mom to Dylan,  heart transplant recipient

Like many of my fellow transplant moms (and dads), my journey has been a rollercoaster of emotions, filled with moments of fear, gratitude, and overwhelming love. When our son Dylan was born with cardiomyopathy and received a heart transplant at 8 months old, this experience shaped our perspective in ways I could have never imagined.

I’ve witnessed firsthand the transformative power of organ donation, as my child received the gift of life through a selfless donor family. It never escapes me, the grace that is in the act of donating life at your family’s most agonizing moment of loss. Every beat of my son’s new heart is a testament to the generosity and compassion of a stranger, a hero whose legacy lives on through the miracle of transplantation. We are forever grateful to his donor family. We are forever grateful to the many transplant clinicians who helped us through this journey from both Children’s Medical Center in Dallas and Phoenix Children’s Hospital. Because of them, Dylan is now a healthy high school sophomore who participates in many sports.  If it weren’t for his scar, you would never have known his journey from end stage organ failure to thriving student and athlete.

 

A Personal Journey: From a Liver Transplant Recipient Family
Written by Jennifer Lau, mom to Nate, liver transplant recipient

My son Nathan was born with a rare liver disease, called biliary atresia (BA). He was diagnosed at age 6 weeks at Ann and Robert H. Lurie Children’s Hospital of Chicago. After palliative surgery was attempted, it was clear the procedure was deemed unsuccessful, the liver started to deteriorate, and a liver transplant would be the only treatment to save his life. At the time of his transplant evaluation, we learned Nathan was very fortunate that he was a good candidate to receive a living donor liver transplant. We started identifying friends and family who might be suitable donors. The living donor process can be lengthy. The medical team for the donor looks at blood type, medical history, and psychological and social support. Then, while Nathan was admitted, I received a phone call that I will never forget: a dear friend of mine called to tell me that she learned she was a match for Nate and that she agreed to be his living donor. I think this was the first time that I had exhaled in months. Tears of so many mixed emotions started to fill my eyes. She was our hero, Nathan’s guardian angel. At 10 months old, Nathan and my friend went into surgery; he received his gift of life, she recovered fully, and to this day, they both have never looked back.

 

Looking Forward: A Future of Hope and Awareness

As we celebrate National Pediatric Transplant Week and reflect on what we have accomplished so far, we are filled with hope for the future. We can continue to raise awareness, advocate for change, and support families in need.

Together, we can ensure that every child awaiting transplantation receives the gift of hope and healing. Together, we can honor the donors who have given so generously, their legacy living on in the lives they’ve touched.

In the end, National Pediatric Transplant Week is about celebrating the resilience of the human spirit, the power of community and caregivers, and the transformative gift of life. It’s a testament to the strength and courage of transplant families everywhere.

Thank you to the many transplant clinicians and OPO’s that make transplants possible.

Join Transplant Families at the free, virtual Pediatric Transplant Conference on Friday, April 26, 2024 from 10:00AM – 3:30PM EDT.

Learn from the nation’s top pediatric transplant experts and community members on what is possible to improve the lives of all pediatric transplant recipient children and their families.

 

Written by:
Melissa McQueen (mom to Dylan – heart transplant recipient)
President/Executive Director – Transplant Families

Jennifer Lau (mom to Nate – liver transplant recipient)
Vice President – Transplant Families
President – BARE