If you’d like to donate to help find a cure for this disease, visit Mackenzie’s “Hope”
To learn more about Mackenzie, the disease, and Mackenzie’s friends who are also struggling with it, visit www.mackenzieshope.com.
Thank you to the Gair family for sharing this story about their beautiful daughter – Mackenzie.
Mackenzie Marie Gair was born on April 20, 2008, a beautiful, perfect, smiling baby girl. Scott and Tara, and big brother Brycen, were excited about the new addition that completed the family – mom, dad, big brother and baby sister.
“Mackenzie was growing like a weed. At 12 months she was a walking pro, at 15 months she was already talking, and at two years, she was getting into trouble and liked things her way,” remembers Tara.
Around Mackenzie’s third birthday, Scott and Tara were concerned that she wasn’t talking as much as other children her age. In fall 2011, the family made their first appointment with Mackenzie’s new pediatrician. She was concerned and referred the family to speech therapy.
Three weeks later, Mackenzie had her first seizure – it was an “absence seizure,” which begins on both sides of the brain at the same time and ends quickly. Scott and Tara brought Mackenzie to the Children’s Hospital ER, and by the time they arrived, Mackenzie was fine.
Within a week before the family’s pediatrician appointment, Mackenzie had another seizure. Once again, the family went to the ER. This time Mackenzie was booked for an EEG, a method to record the brain’s electrical activity, in January 2012.
The pediatrician put her on Valporic Acid, an anti-convulsant medication, and the next day Mackenzie had 25 absence seizures. “We were frightened and scared. We knew it would take time for the meds to kick in, but we just couldn’t keep watching her go into these little trances,” says Tara.
The family went to the ER again, but this time they admitted Mackenzie to monitor her seizure activity, and answered questions for the genetic team. After three nights in the hospital, the family went home to start Mackenzie on seizure meds.
The following months were a blur of meds, tests, and doctor appointments. On April 25, 2012, Mackenzie had her genetics appointment and the doctor took a blood sample to test for Rett or Angelman syndromes. Three weeks later, Scott and Tara received a call from the genetics department to discuss Mackenzie’s preliminary test results.
“My heart sank…why do they need to meet with us for preliminary results?,” Tara recalls wondering. “How did they get the results so fast? The doctor said these results could take months.”
On August 14, 2017, cuddled in the family’s arms at home, Mackenzie took her last breath. Mackenzie’s in memoriam sums up her nine beautiful years that she gave to those around her: