ABOUT LILY

Lily loves spending time with her family and friends in the beautiful mountains of Colorado, at the family cottages on Lake Michigan, in the rainforest of Costa Rica and playing on the water at Shelter Island.

Lily is active… being so is part of the CF wellness protocol. She spends most of her time outdoors engaged in various sports & activities. Exercise is extremely important for lung health.

Lily skis, rides horses, plays lacrosse & field hockey, waterskis, surfs & rides roller coasters at Michigan Adventure. Does riding roller coasters count as exercise? Probably not. However, screaming at the top of ones’ lungs definitely gets the tiny airway sacs of the bronchioles fully engaged.

Singing has a similar effect on the lungs…. movement.  Vibrations create muscle, from muscle comes strength. And with strength comes the ability to work through some of the glitches that come with the CF disease.

Lily sings & dances each summer at the Jinx performance during our visit to the cottages at Lake Michigan. Weeks of rehearsal, consisting of numerous songs to be sung and dance moves to be perfected, work her lungs well.

Hula dancing is a workout too. Lily danced at a Hawaiian luau held in her honor. A trip to Kauai was granted to Lily in the spring of 2014 by The Make a Wish Foundation.

Besides learning the hula, Lily surfed, swam and snorkeled in the azure, clear waters. Lily’s lungs felt strong. Her health is always better after having been in saltwater.

Salt is extremely important for people with CF. Simply defined, Cystic Fibrosis is a sodium-chloride transfer disorder. Too much salt is passed from the cellular level to the skin. Lily’s skin is very salty. This imbalance causes problems with the function of most of her organs, sort of like a ‘traffic jam.’

As a family, we have taken several trips to the verdant land and sandy shores of Costa Rica. Being in a natural saline-infused environment, playing in the ocean and howling at the monkeys is restorative. It’s a lot of fun as well.

Shelter Island is our destination for a few weeks each summer. This twelve square mile island is nestled between the North and South Forks of Long Island. It is surrounded by Shelter Island Sound, Gardiner’s & Peconic Bay, which provides plenty of salty volume for Lily’s water activities.

Breathing in the salty mist from the ocean has been proven to restore balance to the lungs. It acts as a natural lubricant, allowing the lining of the lungs, bronchus and bronchioles to stay moist. The result? …the ability to take deep, healthy, full breaths. Therefore, we try to get Lily to a beach a few times each year.

Check out this site which pairs people with CF and professional surfers at different beaches around the country.

Many of the beautiful photos of Lily that you see throughout the website were taken by Michele Cardamone Photography. Michele photographed Lily to help raise awareness of CF.

Michele also wrote a wonderful article about Lily which she shares with her clients.

Read the Article on Michele's Website
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