Update from 2018 Partner Gloria Johnson
With funds raised, the Johnson Family was able to make some much needed updates and even purchase a new chariot!
Gloria Johnson
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Gloria Johnson is a bubbly 9 year-old girl in the 4th grade at Stratham Memorial School. She is happy and funny and talks to everyone and anyone! Her happiness is contagious and her smile infectious. Her parents, April and Josh, have enjoyed watching her grow and develop and are extremely proud of her positive outlook on life.
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Our Miracle
Gloria's family refers to her as “our miracle.” Gloria was born with severe brain malformations, and she is missing nearly half of her brain. As a result, she battles cerebral palsy, and a seizure disorder. "We were given very little hope by doctors for her outcome at birth, but Gloria defied all of the expectations and continues to do so each and every day," says her mom April.
Lights for Lives Goals
Gloria struggles with daily seizures for which she takes many medications. She is also on a very specialized diet called the Ketogenic diet which helps with the seizures, but requires an inordinate amount of time and preparation for her parents to maintain and follow.
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Read more about the Ketogenic Diet and the Johnson Family's interview with WBUR.
A year ago, Gloria had major hip surgery and has made wonderful gains physically. However, her independent mobility remains her biggest obstacle. Our goal with Lights for Lives is to raise funds to help Gloria gain more independent mobility. Ballet bars that will allow Gloria to move safely around her home without her wheelchair and handicap bathroom accessories are two examples of improvements needed to assist Gloria.
In addition, we hope to purchase outdoor adaptive equipment that will allow Gloria to enjoy outdoor activities with her family. April says, “We love to run, hike and bike together as a family and we carry, push, or pull Gloria along because she wants to be with us!”
The Johnson Family
Gloria is thrilled that she was able to walk onto the school bus this year with assistance. Little things that many of us take for granted are major sources of accomplishment and satisfaction for this brave and amazing girl. She faces each day with a smile and a determination that defies logic.
She has a very supportive family, including her older brother Noah, age 12, who loves her dearly and takes wonderful care of her. Lydia, age 6, is Gloria's younger sister and she too has been a wonderful loving, and caring sibling for Gloria.
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An Inspiration
April reflects, “Noah was a terrific big brother the day Gloria was born! Both he and Lydia are very kind to their sister and talk calmly and hold their sister's hand throughout a seizure. Collectively we as a family are better people for having Gloria in our lives and gather daily inspiration from her.”