ANN ARBOR, Mich. – A determined and resilient 11-year-old with a rare disease has inspired the Wayne and Joan Webber Foundation to donate $7.5 million to University of Michigan Health C.S. Mott Children’s Hospital.
The gift will go towards technology-based care and additional social work services for the families of young patients impacted by complex diagnoses, Michigan Medicine officials said.
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Reese Partlow, the grandniece of Wayne and Joan Webber, has been receiving treatment for mucolipidosis type II disease at Mott. Known as I-cell disease, the genetic condition affects enzyme deficiencies and impacts the breakdown of certain fats and carbohydrates, according to the National Organization for Rare Disorders. The disorder can impact muscles, the skeleton and brain development, among other parts of the body.
Partlow first visited C.S. Mott when she was seven weeks old. She was diagnosed with an enlarged part of her heart. Eventually, her I-cell disease was confirmed after more developmental delays.
“It’s so cool to see how people love Reese so much,” said Reese’s mother, Leslie Partlow, in a release. “And she loves everyone — she just wants someone to play with her all the time, and she has a great, subtle sense of humor.”
Officials said the now 11-year-old has had several surgeries and other difficulties requiring specialists while at Mott. She has been supported by Arbor Hospice since 2017.
“The way Reese is living her life has taught me and the people around her so much. Through the surgeries, illnesses, and other challenges, she’s managed to find a way to not let anything hold her back,” said her father, Mike Partlow.
“Hopefully her story can capture the fact that great work is being done at Mott and her experience can help other kids moving forward.”
Michigan Medicine officials shared that the incurable, and often fatal, I-cell disease typically causes slowed growth and developmental delays, including motor skills and speech, in young infants. Some children with the disease don’t live beyond early childhood.
The hospital’s Pediatric Cardiothoracic Intensive Care Unit will be renamed the Reese Partlow PCTU to honor Partlow’s enduring resilience.
Here’s what the gift will support:
Part of the $7.5 million will create the Wayne and Joan Webber Little Victors Virtual Care Congenital Heart Fund. This will power the hospital’s use of technology with children with cardiac conditions, including virtual therapies, remote services and wearable devices.
Similar technology-based devices and care will be available for children needing gastrointestinal care thanks to the Wayne and Joan Webber Little Victors Virtual Care Gastrointestinal Fund.
“The use of virtual visits, monitoring devices, and other tools was growing before the COVID-19 pandemic, but that experience really showed how these resources could transform care for the kids who need it most,” said C.S. Mott Division Director of Pediatric Cardiology and Co-director of the U-M Health Congenital Heart Center Dr. John Charpie, in a release.
“These tools can keep our care teams more connected with families and could decrease their trips to the hospital because we can quickly intervene and respond to changes in a patient’s health based on real-time monitoring of their condition,” he said.
The Reese Partlow Social Worker in Genetic Counseling Fund will also be established thanks to the Webber donation. The fund will support a trained social worker who will aid families as they deal with shocking news and generic diagnoses. The social worker will be able to help families find resources and support networks as their lives change
“We are so grateful for the generosity and vision of the Webber Foundation. This gift drives the innovation and technology that keeps Mott at the leading-edge of pediatric medicine and allows our Little Victors and their families to receive the highest quality care, even in the comfort of their own homes,” said C.S. Mott COO Luanne Thomas Ewald.
“And the commitment to providing social work services is so important to families that will undoubtedly encounter questions and difficulties throughout their child’s journey. These types of services can make sure that they feel supported and know that they aren’t alone.”
The funding was bequeathed by Cynthia Webber Helisek, Reese’s grandmother, who wanted the money to improve the lives of patients during their healthcare experiences. Helisek is the president of the Webber Foundation and a niece of Wayne and Joan Webber.