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Baie Verte family bringing more magic to Ronald McDonald House

Drew Lewis of Baie Verte poses with his mom, Terri Lynn, and the toys they purchased from donations for the Magic Room at the Ronald McDonald House.
Drew Lewis of Baie Verte poses with his mom, Terri Lynn, and the toys they purchased from donations for the Magic Room at the Ronald McDonald House.

BAIE VERTE, NL - Drew Lewis is a bit of a celebrity in and around Baie Verte.  

When the young boy's mom, Terri Lynn Lewis, decided to help Ronald McDonald House and families who spend time there, people answered the call.

Drew has Opsoclonus Myoclonus Syndrome (OMS). It is an extremely rare neurological disorder - affecting one in 10 million people per year - of unknown causes that appears to be the result of an autoimmune process involving the nervous system.

It is characterized by associated ocular, motor, behavioral, sleep, and language disturbances.

Drew requires regular chemotherapy treatments and steroids to keep cancerous cells from attacking his cerebellum and brain stem.

In 2013, when he was just four years old, Drew travelled to Illinois to visit Dr. Michael Pranzatelli, a world-renowned OMS specialist.

Drew Lewis of Baie Verte headed back to the Janeway Children's Hospital in St. John's this week. He took with him a trunk load of toys and money to go shopping to help replenish the Magic Room at Ronald McDonald House.

The trip and medical expenses cost $30,000, a sum the Lewis family could afford because of the community at large. Fundraising efforts and generous donations came from across the Baie Verte Peninsula, the province and the country.

It was generosity that was never forgotten.

Four years later, Drew is now a Grade 3 student at Copper Ridge Academy. He loves gym, art, and being involved in his school and community.

Symptoms such as extreme irritability, rage, and difficulty with speech are some of the challenges he faces, but Drew soldiers on. His mother encourages him to stay active by allowing him to help out with chores around the house, and by being involved in the community.

She says they are also able to do that thanks to the acceptance and tolerance of the people surrounding them.

A couple of years ago, Drew had a wish fulfilled by the Children's Wish Foundation - a trip to Disney World.

Cancer treatment and monitoring the disease require monthly trips to the Janeway Children's Hospital in St. John's. The 1,200-kilometre round trip is sometimes made easier by a stay at Ronald McDonald House Newfoundland and Labrador. It is not always available to them, Lewis said, but when it is, it is truly a Godsend.

Drew completed six weeks of chemotherapy in January. During a visit at the Ronald McDonald House, Lewis noticed there were not as many toys in the Magic Room as previous times. It is a place Drew loves to go to after difficult periods of chemotherapy and other treatments to pick out a toy to take home.

Lewis turned to Facebook with her intention of collecting donations to replenish the toys for the Magic Room. As in the past, the people of Baie Verte, the entire peninsula, the province, and across the country came through.

Drew was back at the Janeway this week. He will receive the results of last month's spinal tap and MRI, which will determine whether the chemotherapy and treatment were effective in getting rid of the cancer.

Good news would mean no more chemotherapy.

Regardless of the news, the Lewis family travelled to St. John's with a trunk load of toys and some cash for shopping. They collected $500 and will be going to Wal-Mart to finish off the shopping spree on toys for the Magic Room.

"It was so sweet," Lewis said of the generosity of people. "It means so much to me, I can't explain how good it makes me feel and how proud I am to live in a community that will help out as much as they do."

With all that has been given to the family through Drew's difficult journey, Lewis said she tries to give back as much as possible. Sometimes that is as simple as cooking a pizza during their stay at the Ronald McDonald House, to something as thrilling as this donation.

"You can't imagine how relieved we are when we are able to stay here," she said.

To be able to give something back means so much. It is something celebrities are known to do.

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