Baie Verte fam­ily giv­ing back to Ron­ald McDon­ald House

$500 in toys to help re­plen­ish Magic Room

Nor'wester (Springdale) - - FRONT PAGE - BY CORY HUR­LEY

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.

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.”

SUB­MIT­TED PHOTO

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.

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