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May 29, 1969 – February 17, 2006

Julie SmythSwartz Creek, Michigan

My sister Julie’s struggle with NBIA has ended. Only a few weeks have passed, and the loose ends surrounding her death still need to be taken care of. And even though the loss is still constantly on my mind, this may be the best time to reflect on her struggle, the impact of her death and the influence Julie had on my family.

Shortly after Julie was born in Flint, Mich., my parents as well as my brothers and I knew our youngest sibling and only sister would not be like other girls. She was developmentally challenged and would require much more care. Our family and friends rose to the challenge. We were drawn closer together and became very protective of Julie. The struggles we faced were nothing like what was to come.

Despite her impairment, Julie was very active and had many interests. She attended school at the Elmer Knopf Learning Center. She was active in the Special Olympics, bowling and just about everything else the school offered. My parents, Roy (who preceded Julie in death Feb. 7, 2001) and Maxine Smyth saw to that.

Julie loved music and dancing. She loved going to concerts and listening to country music. She was one of Elvis’s biggest fans. She vacationed from Michigan to Florida to California and places in between. My family had a summer cottage on Elk Lake in an area people from Michigan call “up north.” Julie cherished her visits there and named it the “rock pile,” after a pile of rocks used to construct the fireplace. Her life was relatively good and she was a very happy person.

When Julie got older she moved to a group home with other special adults. Not long after that, we noticed a slight change in her condition. Tests were inconclusive. Finally, doctors at Henry Ford Hospital made the diagnosis of NBIA. As you can imagine, the prognosis hit us like a ton of bricks.

Later Julie left the group home and lived at an area nursing home that offered physical therapy to assist in Julie’s declining condition. Although her abilities worsened she still had a smile for everyone. Not much information was available eight years ago and what information we could find was not good.

As her abilities declined and reached a plateau, we searched for answers. Eventually we heard of NBIA Disorders Association and turned to this terrific association for information. We read each newsletter and knew we were not alone in our search for answers. We read stories about other young people deprived of a long, healthy life and somehow hoped our sister could cheat the inevitable. We appreciate the association being there as a source of support and information.

On Feb. 17, the inevitable could wait no longer. Julie was taken from us. Though her life was cut short, the impact she had on those who loved her will last forever. She made us better people.

Thanks for everything,

- Jack Smyth

 

 

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