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Volunteer Advocate
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A mother’s story

My name is Trish Vendittelli and my husband Richard and I are proud parents of two girls, Sloane Lilyana (7) and Harper Avery (3), and we live in Oakville, Ontario. Richard is an electrician and I am a high school English teacher; we both love our careers, almost as much as our roles as parents. Like most, we are a very busy family, and apart from our own hobbies and interests (hockey, yoga, and baseball), our children are very involved in activities outside of school, including dance, swimming, art, soccer, choir, baseball and gymnastics. Considering our active lifestyles, our down-time at home is precious; we love watching movies, playing board games, jumping on the trampoline and going for bike rides as a family whenever we can carve out the time. We also love spending time with our extended family as well as friends and we do our best to balance it all. When it comes to our attitude regarding Sloane’s diagnosis, we take it in stride. Instead of being consumed with all our fears and dread associated with Cystic Fibrosis, we do our best to focus on all the beautiful and positive aspects of raising two phenomenal daughters.

Sloane was born on July 7, 2010 at Credit Valley Hospital in Mississauga, Ontario. When she arrived, her nurse immediately noticed her belly was distended and after one day in the special care nursery at CVH, they transferred Sloane to SickKids where she spent the next three weeks under the watchful eye of Dr. Hilary Whyte in the NICU. The newborn screening at CVH detected an early diagnosis of Cystic Fibrosis, but SickKids was not made aware; it took them ten days to determine the cause of her bowel obstruction. After her first surgery, they discovered she had meconium ileus, a clear marker for CF. Richard and I were in shock; we had never heard of Cystic Fibrosis before, nor did we know it ran in our family. The day she was officially diagnosed is forever engrained in our memories. But we quickly accepted this reality and thus began our journey of discovery, education, and advocacy for our little warrior. As a result of her meconium ileus, Sloane had an ileostomy in place for six weeks and it was very overwhelming for us to manage and maintain. Fortunately, they performed a reversal surgery one day short of six weeks and from there, she flourished and grew!

Since then, our CF journey has been a rollercoaster ride, filled with several ups and downs, and sometimes steep drops that take our breath away. The downs have included three two-week hospital stays at SickKids to treat lung infections, an intussusception, and persistent low lung functions. Sloane also struggles to comply with her CF routine; sometimes she refuses to do her physiotherapy, or take her daily medications, and resists learning how to swallow pills. She often neglects to keep her hands clean and out of her mouth because she bites her nails. Furthermore, when her sister, Harper, was born, Sloane started to notice that she didn’t have to do treatments, and thus, inevitably, the dreaded question arose: “Why do I have CF and Harper doesn’t?”L

The ups have included so many wonderful milestones. When Sloane was three, she asked for a baby sister and voila, Harper arrived one year later! Despite her three hospital stays, the amazing CF team at SickKids including, Dr. Harmut Grasemann, her primary respirologist, have been instrumental in ensuring Sloane is a regular thriving, growing, and active little girl. Her weight remains in the 80th percentile and her height is almost in the 90th. She played a pirate in her school musical, Peter Pan, and loved being centre stage! She has also performed in two dance recitals in both jazz and tap. Sloane is also in her school choir and has participated in several concerts with her peers, unknowingly exercising her lungs and making us very happy! In March 2017, we took our first family vacation to Mexico, where the girls absolutely LOVED their time on the beach, hanging poolside, and eating lots of tacos and guacamole. Sloane recently sent three wishes to Make-A-Wish and her first choice, the Disney Cruise, was granted! We are going in March, 2018 and are counting down the days!

Cystic fibrosis is an invisible disease. At a glance, Sloane looks like a typical, normal, healthy seven year old, but what people don’t see are her daily battles. She spends up to two hours every day doing physiotherapy, she is more susceptible to catching viruses and infections, and she is restricted from certain activities, so she often misses out on her peers’ birthday parties as a result. When hospitalized, she feels isolated and alone, as she misses school and worries she will fall behind. Moreover, she has to consume up to 30 digestive enzymes every day, which help her absorb the nutrients in her food, and she sometimes feels self-conscious when other people ask why she has to take them. There are many battles Sloane bravely faces every single day of which most people are unaware.

But now that you know, there is a way to help her and the over 4,000 Canadians who suffer from this fatal genetic disease and that is by spreading awareness and by supporting Cystic Fibrosis Canada. This Christmas, please give the gift of breathing easy and make a donation. Funds raised are dedicated to critical and individualized care and research so that Sloane and all CFers can surpass the median survival age of 53 years. Our Christmas wish this year is that our daughters will live healthy and happy lives, but most importantly, that Sloane will outlive us!

For the Vendittelli family and everyone else affected by CF, be the reason for a cure: http://bit.ly/2ADWJym

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