January 31, 2019
Shortly after turning two, Brooklynn lost her hearing and the ability to walk and talk. Diagnosed with a rare genetic condition called riboflavin transporter deficiency, her journey with the IWK Health Centre is ongoing. Despite her complicated illness, Brooklynn finds many reasons to smile.
Watch the video below to meet this little girl who spreads happiness everywhere she goes!
“Brooklynn’s first words were Dada followed by Momma,” recounts her mom Vanessa Farmer. 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, facial weakness, hearing, weakness in arms and legs. For daily treatment, she must take a high dose of riboflavin and 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.
Today, Brooklynn is back home and visits the IWK weekly to see one of her 13 medical specialists for care. She requires the use of a mobility chair to help her get around and is getting stronger each day. Her parents hope that she will one day walk and talk again and credit the IWK for the incredible care of their daughter.
“The IWK has been an amazing support system for us,” said Vanessa. “The level of care they provide and the passion they put into their roles, despite how challenging it can be means so much to us.”
Story produced by C100/Virgin Radio Halifax.