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Community support a breath of fresh air

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Community support a breath of fresh air

One local family will soon be breathing much easier thanks to an overwhelming outpouring of support from the community and donors online.

Lindsay Delorme, who grew up in Johnstown, was diagnosed with Cystic Fibrosis (CF) at four months old. The chronic lung disease is the most common fatal genetic disease affecting Canadian children and young adults. Her parents were told she would not live past the age of four. Thanks to advancements in research and treatment, the current life expectancy of CF patients is growing at 50 years in Canada. At present, there is no cure.

Now 28 years old, Delorme is married and has recently adopted her now 15 month-old son Cohen with husband Joey Delorme. Currently she does a minimum of one hour of treatments in the morning and one hour of treatments at night. She must take 30-40 pills everyday; each one having a vital purpose that helps key components of her body including the digestive system, liver, and bones. It is also imperative that she maintain a regular exercise schedule of at least 45 minutes a day to ensure her lungs are working to their fullest capacity. Her one hour treatments consist of two medications via inhalation and Positive Expiratory Pressure Therapy. Along with her diagnosis of CF, Lindsay was diagnosed with Rheumatoid Juvenile Arthritis at the age of eight. For this, she must take two injections a week to maintain mobility and be able to function day to day.

CF causes various effects on the body, but mainly affects the digestive system and lungs. CF patients have a very weak immune system and therefore are much more susceptible to colds and viruses. When a person with CF catches a cold, they are commonly admitted to the hospital for an average of two weeks for heavy doses of antibiotics. The average CF patient is admitted to the hospital at least twice per year. Delorme however, had not been hospitalized due to her CF in 20 years when she caught a chest cold in February.

"I caught a cold three weeks ago and developed pneumonia in my upper lung. I was hospitalized for nine days and had to have a PICC line (peripherally inserted central catheter) inserted into my arm for antibiotic treatment. It's a 40cm-long tube that runs from the arm muscle to a main artery and can stay inserted for up to two years," said Lindsay.

"Her being in the hospital really got us thinking about what we could do to make life easier for her and our family, and to decrease the chance of another infection," said her husband Joey Delorme.

Delorme and her husband had talked about Vest Therapy many times. The vest is a machine made up of two parts - an air-pulse generator and an inflatable vest that wraps completely around the chest. The air pulse generator creates rapid bursts of air that make the vest inflate and deflate against the chest wall. The vibration of the vest against the chest wall helps to loosen mucus. The vest creates an airflow that helps to move mucus from the airway walls. The minimum cost for the machine is $10,000. With Delorme's medication costs reaching over $3,500 not including any equipment needed, the vest seemed out of reach for the young family in the near-future. Delorme is unable to get health insurance because of her condition.

When Delorme returned home from the hospital, her husband decided to take a chance and start a GoFundMe page for his wife's treatment.

The page opened with a very poignant statement from Joey:

"I would like you to go find a straw you have lying around the house. Put one end in your mouth and breathe through it for one minute, then maybe try doing it for ten minutes. I bet you're now trying to catch your breath or coughing? Now try doing that 24 hours a day, seven days a week, and you might have a small idea what Lindsay has to go through every day of her life. She will never know the feeling that we all take for granted which is breathing good; we don't even think about it, it comes natural to us. Think of those hot humid days we have in Ontario and you feel like you can't breathe and it's heavy - she feels like this all the time."

The fundraiser was posted to Facebook, and within hours was shared and spread throughout social media and the local community. 22 hours after creating the page, the Delormes had reached their $10,000 goal.

"I shared the page and all the sudden both of our phones started going off like crazy; we couldn't believe it. People were sharing and donating non-stop, it was amazing. I thought maybe it might raise the money in a year or two. I never imagined this would happen," said Joey.

"I was in shock - I couldn't believe all these people were donating to help me and my family. Strangers we have never met were donating, the support was overwhelming," said Lindsay.

In less than a week, the fundraiser had collected close to $13,500 for Delorme's Vest Therapy. Thanks to the additional financial support, the family is now planning to purchase the battery-operated, mobile vest.

"Thanks to all the people donating, we can now look into purchasing the newer version of the vest, which is mobile and gives more localized treatment. With a 15-month-old son, being able to move around while receiving treatment will make a huge difference," said Joey.

"We are just really thankful and this will be life-changing for me and for my family," said Lindsay.

To donate to the Delorme family, visit the GoFundMe page at www.gofundme.com/x4mshe-breathe-easy. More information about Cystic Fibrosis can be found at www.cysticfibrosis.ca.

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