Finding Hope in Riley and Dance Marathons
Our daughter Marlee was born in Bloomington, Ind., and transferred to Riley Hospital shortly after birth. Marlee was born with a rare condition that caused her to develop only three of the 12 ribs on her right side, which caused scoliosis of her spine and affected her lung development. Because her lungs didn’t have enough room to develop fully, Marlee needed some help breathing. She was ventilator-dependent since arriving in the NICU at Riley and received a tracheostomy at 10 days old. Despite being full-term, Marlee was tiny, weighing 4 lbs., 15 oz. During her stay at Riley, she received a g-tube for feedings and was transferred from the hospital ventilator to the home ventilator.
Pulmonologist Dr. Veda Ackerman, Urologist Dr. Richard Rink and Neurosurgeon Dr. Laurie Ackerman have been Marlee’s biggest cheerleaders through our Riley journey. They have provided excellent care, emotional support, kindness and compassion that was necessary to continue along this journey.
We have referred to Dr. Veda Ackerman as Marlee’s “primary care physician” for years as she has provided the stability in Marlee’s pulmonary health which has led to improvement in many other areas. Dr. Ackerman holds a special place in our hearts for providing us the wisdom and support to learn to care for Marlee and manage her care outside of the hospital/nursing home setting where many other ventilator dependent children must live.
Dr. Richard Rink was instrumental in scheduling the first family conference where Marlee’s physicians met with family to develop a plan encompassing all areas of her care. This was extremely helpful in starting Marlee on her way to eventual release from Riley to home. We are forever grateful for supporting our family in this way. Dr. Rink has continued to provide compassionate urologic care to Marlee.
Dr. Laurie Ackerman has saved Marlee’s life twice. She was called upon when her partner fell ill during Marlee’s spinal cord de-tethering surgery at age 14 months. Not many physicians would have stepped into such a situation without knowing the patient’s history. Dr. Ackerman’s compassion and skills shined through as she completed the surgery flawlessly. This provided Marlee with the opportunity to have two VEPTR (Vertical Expandable Prosthetic Titanium Ribs) placed to stabilize her chest wall. Dr. Ackerman was called upon again three years later when Marlee suffered damage to her spinal cord during an adjustment to her VEPTR rods. This required a miraculous repair of the spinal fluid leak at the hands of Dr. Ackerman, who was flawless again.
These physicians at Riley have become part of our family. They continue to be supportive and often state their amazement at all she has accomplished in light of the challenges she has been given.
The nurses in the NICU were so loving and caring to Marlee during her stay. Jane Hesler, RN, and respiratory therapist Carla Flager have been close friends of our family since her stay in the Infant ICU. Their support, compassion and training helped us through many tough days during the long stay.
At 6 months old, Marlee was discharged and went home with a ventilator and a lot of other equipment. Those first months and years were full of challenges, adjustments and learning. Marlee has had 17 surgeries to help stabilize her spine and give her lungs more room to expand. She has been able to come off the ventilator during the day, and live the life of a normal 8-year-old. She has also weaned off of g-tube feedings, and has been g-tube free for more than a year and a half.
Marlee has overcome many things with the help of the doctors and staff at Riley. She has grown into a beautiful little girl inside and out. She loves school, playing guitar, singing Taylor Swift songs, painting and jumping on her trampoline.
Last fall, Marlee participated in her first IU Dance Marathon. She was hooked, and now spends lots of time with her friends from IUDM. They too have become part of our family and we are forever grateful to these young adults who are dedicated to helping Marlee and the many Riley Kids. We were also excited to participate in the Bloomington High School South DM this year. We met more friends who are devoted to helping Riley Kids.
Riley Dance Marathons have given Marlee a way to express herself and share what she has gone through as a Riley kid. She is surrounded by other Riley kids and lots of people who care very deeply for these kids.
Riley has always been a place of hope for our family. They provided Marlee with a chance for life, and made it possible for her to grow strong and healthy. We are forever grateful for all that Riley does.
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