Honouring the legacy of Brooklynn
“Brooklynn’s first words were Dada followed by Momma,” her mom, Vanessa, recounts. Like so many other families, Brooklynn’s parents watched as their beautiful little girl hit many of the expected toddler milestones. First, she crawled, then she started to talk and then walk.
Shortly after Brooklynn’s second birthday, her parents noticed she had lost her ability to speak and had trouble hearing. In March 2018, Brooklynn had surgery for cochlear implants to help her regain some of her hearing. But Brooklynn’s IWK story didn’t end here.
Her mom, dad Paul and big brother Brayden watched in heartbreak as she developed paralysis of her arms, stopped being able to talk and could no longer walk or sit unsupported. All the milestones they had watched her achieve had somehow become undone.
After extensive testing at the IWK, the family learned in July that Brooklynn had a very rare condition called riboflavin transporter deficiency (RTD). It’s a progressive neurodegenerative disease that can affect one’s speech, vocal cords and hearing and cause facial weakness and weakness in the arms and legs. For daily treatment, she had to take a high dose of riboflavin, a combination of vitamins and other medications, to help stop the condition from progressing.
Shortly after her diagnosis, complications from her RTD in the form of muscle weakness and respiratory difficulty caused Brooklynn to be admitted to the IWK. Brooklynn and her family stayed at the IWK from August to December.
Although Brooklynn was back home, she visited the IWK weekly to see one of her 13 medical specialists for care. She also required a mobility chair to help her get around.
Brooklynn did well over the next three years, but unfortunately, she developed early-onset scoliosis (a sideways curve in her spine). By October 2021, the degree of the curve in her spine became life-threatening.
She had to undergo a technique called halo-gravity traction, which helps pull the head and spine upward carefully, applying a slow stretch to the spine. Brooklynn had to stay at the IWK for six weeks during the halo-gravity traction.
In December 2021, Brooklynn underwent another surgery to remove the halo and to have Magnetic Controlled Growth Rods (or MAGEC rods) placed in her back to treat her scoliosis further. The MAGEC rods are extendable rods placed on either side of the spine that can help the spine grow straighter and longer.
Brooklynn did exceptionally well following this surgery and returned home two weeks later. Throughout the spring of 2022, she continued to do well. She had learned how to walk again and was able to return to school, ride the bus and continue developing meaningful relationships with her friends.
Sadly, to her family’s complete shock and devastation, Brooklynn passed away suddenly on June 10, 2022, from complications related to RTD. She was just six years old.
“There are some who shine so brightly that even after they are gone, the light remains shining through the darkness and lighting the way of those left behind,” shares Vanessa. “Brooklynn will always be remembered for the beauty and vibrance she emanated into the world and will always be our baby girl.”
