A Story of Courage and Hope

The stories we hear during Christmas are filled with messages of hope and optimism; “Don’t give up,” “Keep going,” no matter what challenges you face. 

Margaret Hackett lives with her parents, Raynelle and Bill, on Marco Island. She was born in Milwaukee, Wisconsin in 1986 and at 18 months, she was diagnosed with a rare condition called craniometaphyseal dysplasia, which causes thickening of the bones in the skull. According to Bill Hackett, Margaret’s dad, “Now we had the diagnosis but there weren’t many doctors that can treat you.” 

The family moved to Glen Ellyn, Illinois when Margaret was two years old, where she enjoyed an active childhood playing softball, skiing, and swimming. It wasn’t until Margaret entered junior high school that she began experiencing severe headaches and the neurosurgeon diagnosed Margaret with Hydrocephalus, a central nervous system (CNS) congenital anomaly that occurs when there is too much fluid in the brain’s ventricles, causing excess pressure in the brain. Several doctors had told the Hackett family that there was nothing more they could do. “I’ll never forget the feeling of desperation trying to find someone who could help us,” said Bill Hackett as they continued searching for help.

Margaret also conducted her own research online and came upon a video of a doctor performing surgery on a young child with a similar condition. He was Dr. David Frim, MD, PhD, an internationally renowned clinical neurosurgeon and neuroscience researcher at the University of Chicago Medicine who specialized in caring for children and adults with CNS congenital anomalies.

Dr. Frim and his team performed surgeries on Margaret every three to six months to remove excess bone and provide additional room for her brain. According to the Hacketts, the neurosurgery program at the University of Chicago Medicine is one of the few in the country dedicated to providing comprehensive care for both children and adults with CNS congenital anomalies. They have been like a second family to Margaret and her family.

When Margaret was in junior high school, she developed another condition, Syringomyelia, where fluid-filled cysts developed along her spinal cord and put a limit to what she could physically do. “I have a progressive disease,” added Margaret, who also shared that she has undergone 40 surgeries, with the last one in 2020.

She recalled there were three consecutive Christmas/New Year’s spent in the hospital in her junior and senior year of high school as well as the following year. She recalled filling out her college application to Northwestern University while at the hospital. Margaret managed to graduate from Glenbard West High School on time with her class despite completing her senior year using private tutors. 

At age twenty-one, the disease started to slow down a bit, and she was able to go back to school at the University of Illinois for two years but had to withdraw due to chronic pain.

Margaret was encouraged by her parents to be her own best advocate early on as nobody knows more about her condition than she does. “Having been through this journey, we want to make a positive difference for others who face similar journeys, added Bill Hackett.

They want to share their knowledge and experience to help others. 

They decided to establish the Margaret Hackett Family Program (MHFP) in CNS anomalies at the University of Chicago Medicine, committed to the wholesome care and treatment of patients with congenital central nervous system (CNS) anomalies. “There can be optimal quality of life for Margaret as well as others who have conditions that fall within this bubble of CNS anomalies,” said Bill. “The whole idea behind the MHFP is to give people hope,” according to Bill. For information, visit the website mhfcp.uchicgo.edu.

According to Margaret, she participates in the virtual monthly Connect Group via Zoon on the first Thursday of each month. It offers that friendly face, sympathetic ear, and an understanding that “you are not alone” to patients and their family members, added Margaret. The MHFP program also aims to build a community for patients and families to connect with one another. 

Margaret and her service dog Feivel are inseparable. He is a golden retriever/black lab mix, and “I got him from Canine Companions when he was two years old, so Feivel has been with me for almost nine years now, which have been the greatest nine years of my life,” said Margaret. Feivel will be 11 years old on Christmas Day!

Outdoor activities we take for granted such as neighborhood walks or taking our dogs to the local park pose accessibility challenges for Margaret and many others like her.