At 10 days old, one local girl was diagnosed with cystic fibrosis (CF), the most common fatal genetic disease that affects one in every 3,600 children born in Canada.
Norah Daignault is now three and a half years old and mom Jade says no one would ever know there was anything wrong with the little bundle of fun that is her daughter.
For Norah, cystic fibrosis affects how she digests food and the way she can absorb the proper nutrients. Also affected are her lungs, a common symptom of CF.
At present there is no cure for the disease.
"Within a week of being diagnosed we were down at B.C. Children's Hospital learning how to take care of Norah and learning about all the things that make her a little bit different than your typical kid," Daignault said.
"Since then, we go down to B.C. Children's Hospital four times a year to meet with her team of specialists."
Every day, Norah takes 20 pills and spends an hour doing breathing therapy.
"And that will continue for the rest of her life," said Daignault.
Breathing therapy includes taking nebulized medication and then doing physiotherapy as part of her daily routine.
"We perform it all ourselves based on the training we received from the physiotherapists at B.C. Children's Hospital," Daignault said about the parenting duties she shares with her husband Sam.
So far, the worst of it was spending Norah's second birthday in B.C. Children's Hospital.
"It was two weeks and we needed to go down there for the specialized care they provide there," Daignault said. "She had a lung infection that wasn't clearing with oral antibiotics so they put her on intravenous antibiotics and did intensive physiotherapy to try to clear the infection out of her lungs. Cystic fibrosis is a progressive condition so it always gets worse and her lungs get worse every day."
You wouldn't know that Norah takes all this medication and does all this physiotherapy, Daignault added.
"But in the end it won't matter because in the end cystic fibrosis will kill her and that's a harsh reality that we have had to face as parents and a harsh reality she will have to face as she gets older."
To support B.C. Children's Hospital and other healthcare centres in the Children's Miracle Network, everyone is encouraged to take part in Miracle Treat Day today by purchasing a Blizzard at Dairy Queen.
Net proceeds from every Blizzard treat sold will be donated to Miracle Network member hospitals.
"Go out and buy a Blizzard - what better way to support a good cause, you get a tasty treat and you get to help kids like Norah," Daignault said.
