Donor Stories – Hilker Family
When we contacted Fred and Berla Hilker to talk about their daughter, Jennifer, they readily agreed, but Fred admitted, quietly, that there are a lot more dramatic and extraordinary stories to be told than their own. Such is this family's way.
Indeed, aside from a 48-hour labour, all seemed ordinary to the Hilkers when Jennifer was born. Then, at three months old, during a routine examination in Kitchener where the family lived, the doctor measured Jennifer's head circumference and sent the Hilkers to an emergency visit with a paediatrician in the same town. That doctor also measured Jennifer's head, and recommended that her parents take her to SickKids in Toronto - now.
A little more than one hour later, the Hilkers were at SickKids where they met with a neurosurgeon who examined her carefully and explained that Jennifer had been born Hydrocephalic - a congenital condition in which an abnormal accumulation of fluid in the cerebral ventricles causes enlargement of the skull and compression of the brain. Over the course of the three months of her life, her head circumference had grown significantly, suggesting a swelling of the brain that gave some cause for alarm. Following the tests and ultimate diagnosis, and in spite of a large waiting room full of people, he took the Hilkers back into his office and spent more than one hour with them, explaining what they, and little Jennifer, were dealing with.
That day was the first of many trips to the Neurology department at SickKids.
The Hilkers later learned that Jennifer had an 'arrested' case of Hydrocephalus, a very rare occurrence in which the volume of liquid in the brain in someone with Hydrocephalus stops producing. In Jennifer's case, the doctors estimate that this liquid 'arrested' production when she was 30 days of age. As a result, and in spite of the fact that Jennifer was later also diagnosed with Spina bifida - a developmental birth defect caused by the incomplete closure of the embryonic neural tube that often afflicts those who suffer from Hydrocephalus - Jennifer's afflictions were mild. While many hydrocephalic patients have severely impaired brain function, can be quadriplegic, and the disease sometimes results in death, Jennifer's condition did not worsen. She had a speech impediment, but she crawled and walked and hit other milestones right on schedule. Jennifer stayed in school and added several courses to her high school diploma, graduating when she was 21. Today, at 28, Jennifer is an active, busy young woman who enjoys spending time with her friends and working as a Crew Trainer at McDonald's.
“She is an unbelievable human being.”
"She is an unbelievable human being," said her father, Fred.
From the time that she was three months old, until the time that Jennifer was 7 or 8 years of age, the Hilkers stayed with SickKids' Neurology department and still appreciate the care that the family received at the Hospital. Fred and Berla have been donors to SickKids since that time, donating each year through various fundraising campaigns. Recently, when they were updating their Wills, they included Jennifer in their discussion. Jennifer has savings and investments of her own, and her parents wanted to help her to draft a Will that set out what she would do with her money if her parents and others close to her predeceased her.
All three of the Hilkers sat down with a lawyer who took the time to help Jennifer to understand the magnitude of the decisions that she needed to make. There were tears in the process as Jennifer tried to imagine that she needed to plan for the possibility that something could happen to her parents and to others included in the Hilker's Wills. The lawyer explained that if this were the case, Jennifer could choose to leave her money to someone or something that mattered to her. After the shortest pause, Jennifer stated simply, "SickKids."
Her parents were amazed. They knew that Jennifer understood that SickKids was at the end of their own succession planning in their Wills and she knows that her parents feel strongly about the connection that they all have to SickKids. (Fred was treated for an eye condition at SickKids when he was a child.) Today, the family has created two generations of a legacy at SickKids. Thank you Fred, Berla and Jennifer for your extraordinary support.
