Family Advisory Board Members

Harper and Laiken were born prematurely in 2013 and spent two months in the Children’s Mercy NICU. Harper suffered significant complications and underwent nine brain surgeries. Her primary diagnosis is cerebral palsy, but she has multiple medical issues. Harper was referred to the Beacon Program in 2014 and Laiken was diagnosed with autism in 2019 with the support of the Beacon Program and the division of Developmental and Behavioral Health.

I always enjoy educating new residents and graduate nurses during annual parent panels. These opportunities highlight the hospital’s commitment to constantly improving the patient and family experience.

I helped launch the first parent-family advisory council for cystic fibrosis at Children's Mercy and have served on several Children's Mercy projects as a family advisor. I am also a registered nurse and direct a children’s community health promotion project.

As a mother of two girls, Children's Mercy has been a very important part of our family for many years. Being a member of the FAB at Children's Mercy has allowed me to offer a parent’s perspective and advocate on behalf of the needs of children with rare diseases, such as my daughter’s. 

I am very fortunate to contribute to the mission of the Family Advisory Board, working together with other families and the amazing leadership team at Children's Mercy to share my family's experiences and advocate on behalf of all parents, patients and families. 

My wife, Barb, and I are proud parents to Benji who was diagnosed, while still in utero, with a congenital diaphragmatic hernia. Benji continues to be cared for by an integrated team of specialists across the Children's Mercy network.

I am a semi-retired architect and full-time community volunteer. I am the proud father of three girls with my best friend and wife, Diane, who is also highly active in the Children’s Mercy family.

My love for Children’s Mercy grew from the care, support and love of my middle daughter, Elizabeth. Elizabeth passed away at the age of 19 from Angelman’s Syndrome and another undiagnosed genetic disorder. Her experience allowed me to share her voice.

In 2014, my son was diagnosed with acute lymphoblastic leukemia. He underwent 3 ½ years of chemotherapy and other pediatric cancer treatments and continues to be seen by the wonderful people in the Hematology/Oncology Clinic.

I joined the Family Advisory Board in 2019 after looking for a way to give back to the organization that has been such a significant part of my family’s journey for the past seven years. I continue to be grateful for the opportunity to advocate for families and patients and contribute to such an extraordinary place.

My husband Mohammad and I have been blessed with five wonderful children. Over the years, we have been treated at many different clinics at Children's Mercy. The most challenging days for our family came in 2019 when our six-year-old daughter, Eman, was diagnosed with a rare brain tumor. Children's Mercy took excellent care of our family and ultimately, we said goodbye to Eman 15 months after her diagnosis. 

It is my honor to be a member of the Family Advisory Board with the hope that I may play a part in facilitating a positive experience for other families seeking treatment at Children's Mercy.

I have been a member of FAB for seven years and continue to be so grateful for the opportunity. My involvement in FAB has allowed me to plug my passion for increasing access into a productive, receptive forum that is dedicated to improving care for all children.

I’ve participated in executive recruitment interviews, diversity and inclusion work groups, a strategic plan workgroup focused on access and navigation, and I am currently working with the Center for Family Connections.

At 9 days old, our son's life was turned upside down. His newborn jaundice reached an extremely toxic level and nearly claimed his life. Thanks to an amazing ER doc, they were able to save his life, but the jaundice left Nathanael with an irreversible brain injury that took his hearing, fine and gross motors skills and much more - and yet, he suffered no cognitive injury.

We have been on quite the journey with much of it at Children's Mercy. Our two girls are also seen at Children's Mercy. We love giving back and using even our tough experiences to make the road a little easier on the next family to walk through the door.

I have been a member of the Family Advisory Board for almost two years. Both of my kids have been patients at Children's Mercy, so when I had a chance to be a part of the board, I was excited to jump in. 

My son was born with a cleft lip and palate, and we spent a lot of time in the Craniofacial/Plastic Clinic. My daughter has been treated for scoliosis. Both of our experiences have been fantastic and I'm so glad that we have such an outstanding children's hospital in the Kansas City Metro area.

My husband Nate, and I have been blessed with four beautiful children, Our oldest Caleb was diagnosed with Duchenne muscular dystrophy and Autism at the age of three here at Children's Mercy Hospital.

I've joined the Family Advisory Board to contribute to enhancing their services beyond just my family's experiences. With over 15 years of gratitude for the care we've received, I aim to help shape a better experience for all families who rely on this hospital.

As a member of the Family Advisory Board, Patient Experience Executive Steering Council, Hem/Onc/BMT Patient Family Advisory Council, and Patient Rights & Responsibilities Committee, I advocate for expert pediatric care in our community. It became my passion when my son, Buddy, was diagnosed with a rare brain tumor at six months old, resulting in multiple disabilities.

Our multi-disciplined Children’s Mercy team is dedicated to enabling Buddy to live his best life and equipping our family with information and resources to maximize his potential. Children’s Mercy has our back and it’s felt in every interaction. I want all families to feel that way.

My husband, Brian, and I have three children - Lilah, Ella and Carter. We fostered and adopted Lilah and Ella and both girls have been given a myriad of diagnoses throughout their lives. We have made Children's Mercy our daughters' specialty medical home and have greatly appreciated the excellent care they have received from all their doctors.

I joined FAB on 2021 and am so grateful for Children's Mercy's desire for family voices in their daily operations. Advocacy and family voice are incredibly important to me and I am thrilled to be serving on FAB with such a passionate group of parents and staff.

As a Family Advisory Board member, Beacon Patient & Family Advisory Council Chair and general volunteer, I’m so thankful our family calls Children’s Mercy our medical home. Children’s Mercy listens to families and provides a safe place to express concerns so our kids and families can have the best experience possible with their medical care.

My husband, Dan, and I have two amazing kids: Hudsyn had a brain injury at birth and Damek has ADHD and level 1 autism. I work full time as a financial planner for special needs families across the country. 

I'm a wife to Tony and mom to Caleb and Steven. I'm grateful to Children’s Mercy and their providers for helping take care of their boys' medical needs and providing them health answers they previously didn’t know due to their adoptions.

I'm an advocate at heart and want to see every child and family receive excellent medical care, such as my desire to serve on the Family Advisory Board. I also serve on many other councils and advisory boards at the county, state and national level.

My husband and I are blessed with four beautiful kids.  Our oldest son was born with aortic stenosis.  He has had several procedures, including open heart surgery at age 5.   Our youngest son was diagnosed with Hirschsprung's Disease at 18 months and has also undergone several procedures and surgeries.   He continues to have daily struggles and we are so grateful for the specialists at Children's Mercy who help us every step of the way.    

I joined FAB in 2023 because we have been on the receiving end of so many  children's hospitals, I was excited for the opportunity to give back and to be given a voice to help where I can.  

My journey with Children’s Mercy started when my son, Aamir, was four months old and finally diagnosed with a rare chromosomal abnormality. Over the next few years, I found my voice as his advocate and knew I could help others facing the same challenges.

My passion for health care and special needs advocacy led me to enter the medical field and serve as a proud member of Children’s Mercy’s Family Advisory Board, Beacon Patient & Family Advisory Council, and Parents as Educators Program. My husband I have six children who all use Children's Mercy for primary care and specialist services.

My husband, Chris, and I are the parents of three children, West, Miller and Wyatt. At four months, our oldest son became very ill. West was diagnosed by the Liver Care Center with a rare disease. The urgency and multidisciplinary approach provided by the team at Children's Mercy allowed West to make a full recovery. Five years later, little brother, Wyatt, was born with the same genetic recessive condition. 

Children's Mercy plays an important role in my sons living their best, healthiest life. I joined the FAB to give back to a hospital that has given my family so much and also to provide a louder voice for all rare disease families. 

My daughter, Leaya, has been receiving treatment at the orthopedic clinic at Children's Mercy since the age of 8 following a scoliosis diagnosis. It was later discovered that she has Ehlers-Danlos syndrome (EDS), leading us to seek care at four additional clinics on a regular basis.

I am motivated to join FAB to advocate for single mothers raising children with chronic illnesses, as well as to represent families of color facing similar challenges. Through my involvement with FAB, I aim to promote equity and inclusion in healthcare for children in the Kansas City area.