In Mackenzie’s Name

written by Michael Anderson posted on December 14, 2017
Our holiday donation remembers a little girl’s brave fight against Batten Disease and her family’s love
In Mackenzie’s name and spirit, 365 Technologies this holiday season is donating to the Canadian Chapter of the BDSRA (Batten Disease Support and Research Association).

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’s Story

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 May 16, 2012, Scott and Tara held hands as they walked into the doctor’s office. The doctor gave them the diagnosis: “Your daughter has classic late Infantile Batten Disease. She will probably be blind by age six, lose her ability to walk and talk, and eventually eat through a tube.”
Batten Disease is named after the British pediatrician who first described it in 1903. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden and unable to communicate, and, presently, it is always fatal.

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:

Although Mackenzie’s illness made her appear frail; she possessed strength, perseverance and an ability to overcome incredible odds and physical challenges. With her strength and courage she showed us that each day is a blessing and an opportunity to create lasting memories. Mack enjoyed cuddling up with loved ones watching her favourite movies or listening to her favourite books. Before Batten Disease took a hold of her body, she enjoyed chasing her brother, dancing to the Wiggles and having tea parties. Her smiles gave those around her strength, courage and hope.
Please join us in donating – in Mackenzie’s name – to help find a cure for this disease: click here to donate here.

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