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Living with a rare illness

Imagine having to breathe through a straw. Every minute of every day, for the rest of your life.

That is the reality for three-year-old Isla Miller, from Kelowna, who suffers from an extremely rare condition called Neuroendocrine Hyperplasia of Infancy (NEHI).

It is so rare that her mother says it's the only case she knows of in the province, and there are only 500 reported cases worldwide.

“It is very poorly understood,” explains mom Julie Miller, who says many cases are misdiagnosed as asthma. “Her lungs actually trap air so she can never fully exhale. So every time she inhales, she cannot inhale fully. It is this constant battle of trying to get the air out of her lungs.”

As today, Feb. 28, is Rare Disease Day and February is Children’s Interstitial and Diffuse Lung Disease Awareness Month (chILD), Isla's mom wants to get the word out.

“I want to raise awareness,” says Miller. “We have a really hard time because we are a really small group. It is lonely mostly and incredibly frustrating.”

Miller says they knew something was wrong right when Isla was born but doctors couldn't figure it out.

She says after several trips to the hospital locally, doctors sent them to Vancouver to go to BC Children's Hospital for more help.

“That is when we were given the diagnosis,” says Miller. “She has been on supplemental oxygen basically every since. That is the only treatment there is, and it isn't really even a treatment it just helps the body copes with it.”

Because of that, her parents often fear any form or flu or cold or respiratory illness that would hurt her more than other children.

“It is isolating and scary,” adds Miller who says she is able to get some support from other parents across the world online.

“There is no research, no definite prognosis, and no cure for any of the 17 subtypes of chILD,” adds Miller who says Isla will likely deal with the condition her entire life, but to what degree they just don’t know.

“The disease was only discovered in 2004, so there are no patients that are even old enough to know what the long term effects really are.”

For more information on Isla's condition check out their foundation page here.



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Megathon cashes in for kids

Saturday marks the second annual YMCA Okanagan Megathon event at the Kelowna Family Y and H2O Centre.

From 5 a.m. to 10 p.m. hundreds of local heroes of all ages and abilities are challenging themselves, while fundraising for kids in our community via the YMCA Strong Kids Campaign.

“Today has been awesome so far, we are actually two-thirds of the way to our goal. Our goal is $25,000, so we are sitting around $17,000 right now which is amazing,” says Kelley Taylor, senior manager of health and fitness for the YMCA Okanagan.

“Last year we raised $17,000 between the two centres and we have already surpassed that, so hopefully we can reach our goal.”

From three-hour cycling events, to 'Amazing Race' style challenges, triathlons and a four hour Zumbathon tonight, members are burning calories, and turning sweat into cash for kids.

“It is a super, super awesome and fun day, the energy is amazing,” adds Taylor. “It is so nice to give back to kids in our community.”

She says all the money raised will stay in the community to help local kids do things like attending childcare camps and buying memberships at the centres.

Taylor says that one in five Okanagan kids currently accessing Y programs are subsidized through the YMCA Strong Kids Campaign.

“Many families simply cannot do it alone.”

For more information on today's event and to get involved check out their website here.  



Fatal hit and run charges dropped

Criminal charges have been dropped against the woman accused in the hit and run death of 83-year-old Julie Gillespie.

Sharon Marlene Scott, 71, was arrested less than 24 hours after Gillespie was hit while walking near an alley next to the Kelowna Daily Courier in November.

A 911 call was placed almost immediately and, while Gillespie was breathing when BC Ambulance personnel arrived, she died later in hospital from injuries suffered in the collision.

Scott was initially charged last year with with failure to stop at an accident causing bodily harm and two counts of failure to stop at an accident with a person.

Those charges have since been dropped and she now faces one count under the motor vehicle act of driving without due care and alertness.

Scott was a contracted driver with the Courier.

She will be back in court March 16. 



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The highway of the sky

If you’ve ever caught yourself daydreaming, staring up into the sky, and thought, 'how do airplanes pick their route?' you’re not alone.

Kelowna International Airport is inviting the public to learn more about flightpath changes in store for the future.

Staff from Nav Canada, WestJet and YLW will be on available Saturday to identify routes in relation to where you live, explain the latest changes and how they will benefit residents in the area.

The information session will take place on the second floor of the airport terminal between 11 a.m. and 3 p.m.

At the same time, the airport’s annual travel show will also be taking place.

Parking is free in the long-term lot. Visitors are asked to bring in their parking voucher to be validated at the event.

If you attend, you can enter to win tickets for two to Europe with Air Canada or a northern adventure to Whitehorse from Air North.

Those who enter the draw in turn give back to the community, with all proceeds from the event being donated to the local charity East Meets West Orphan’s Foundation.

For more airport information on this event and airport news, visit ylw.kelowna.ca.



Cash influx keeps doors open

A new influx of provincial funds has given the overnight shelter at Inn from the Cold new life.

Last week the shelter shared the disappointing news that a lack of funding was forcing it to close its doors early.

In response the B.C. government has decided to provide one-time only funding assistance in the amount of $22,000, to allow the temporary winter shelter to remain open until the end of March.

"The province recognizes the needs of the homeless in Kelowna and this additional funding will enable Inn from the Cold to provide safe, warm accommodation and help their clients connect to community resources and permanent housing,” says Steve Thomson, MLA for Kelowna-Mission.

The shelter on Sutherland Avenue provides 35 beds for those that are homeless and other services including a warm meal, shower and laundry facilities.

"These 35 beds provide safe protection from the elements, and a helping hand to those in need in our community. The staff at Inn from the Cold also provide other helpful services that make a real difference in people's lives,” adds Norm Letnick, MLA for Kelowna-Lake Country.

The B.C. government recently provided $60,000 to Inn from the Cold to complete renovations at their Chandler Street House, an eight bed supportive-housing building for homeless men.

"It's with heartfelt thanks from our staff and volunteers that the Sutherland Avenue shelter will be able to remain open until March 31. We know that when vulnerable people who are homeless are treated with compassion and dignity, and have their basic needs for shelter and warmth met, they can then start their personal journey from homelessness to recovery and independence,” says Mark Dixon, chairman of the board, Inn from the Cold.



Have you seen Bagherra?

Kelowna's financially troubled CrocTalk has suffered more bad news.

Owner Doug Illman says his prized exotic Bengal cat, Bagherra, has gone missing, and he believes the animal was stolen.

The large and distinctively marked cat went missing the evening of Feb. 21.

Illman says he heard the rumble of a strange truck in front of his Stewart Road home, and that was the last he saw of the cat.

"We've had Bagherra for four years. He never strays far from our voice ... with Bengals, when they want out, you have to let them outside. They will let you know. But he's always come when called and never left the yard. He always comes in at night."

Illman says he let the brown and black male cat out between 5 and 7 p.m. that evening, and after the rumble of a loud exhaust outside, he hasn't seen the cat since.

But there have been multiple sightings of Bagherra, from East Kelowna Road all the way to Hollywood Road, Springfield Road and Abbott Street.

"It's now six nights without Bagherra safe and warm at home," Illman posted on Facebook.

He says he's followed up on several tips, including one in which a nurse on break from Kelowna General Hospital petted a cat fitting Bagherra's description. Illman says Bengals are not wildcats, but rather exotics, and are actually quite tame.

Bagherra has a marbled rosette pattern on his fur, with a spotted belly and sits approximately 16 inches tall. He is microchipped with the ID number 956000008495958 and has the licence tag number 397787.

Illman asks if you see the cat, please call him at 250-717-6060 or Brenda Bruce at 250-317-1103.

 



3 among BC's best businesses

Three Okanagan businesses have been named among the top small businesses in the province.

Soil Mate and Float Space of Kelowna, and Mel's Mainstreet Pizza & Pasta of Enderby earned accolades at the 12th annual Small Business B.C. Awards, which were handed out in Vancouver Thursday night.

Soilmate links residents with local agriculture, farms, wineries and restaurants and shops that work with locally-sourced products.

Float Space offers relaxation-seekers their own private nirvana in its sensory deprivation chambers.

And Mel's, as its name implies, is a popular North Okanagan pizzeria.

This year's competition saw record-breaking participation. Winners in 10 categories proved their excellence by competing against more than 460 nominees from 70 communities across the province during the five-month process.

"We are extremely proud to help showcase the diverse talent and tremendous determination that exists amongst B.C.'s entrepreneurs," said George Hunter, CEO of Small Business B.C. We congratulate the winners ... and hope to see even more businesses recognized for their success next year."

To claim the title of best in B.C., businesses had to gain votes from the public to be shortlisted to the top 10, then submit an extended application detailing why they deserved to be named one of B.C.'s best businesses. Once selected as a top 5 finalist, they went on to face a Dragons' Den-style panel of judges, pitching why they should win.

The award winners are:

  • Premier's People's Choice – Julie's Edible Bouquets, Quesnel
  • Best Community Impact – Mealshare, Vancouver
  • Best Company – Nonna Pia's Gourmet Sauces, Whistler
  • Best Concept – Soil Mate, Kelowna
  • Best Emerging Entrepreneur Float Space - Kelowna
  • Best Employer – Origin Gluten-Free Bakery, Victoria
  • Best Immigrant Entrepreneur – Infinity Enterprises Group, Whistler
  • Best International Trade – Target Marine Hatcheries, Sechelt
  • Best Online Marketer – Vonbon Children's Apparel, Vancouver
  • Best Workplace – Mel's Mainstreet Pizza & Pasta, Enderby

The emerging entrepreneur immigrant entrepreneur awards are new this year and were handed out to recognize a young individual who contributes to the social, cultural and economic well-being of their community, as well as an outstanding new Canadian who has started a successful business.

"The Small Business B.C. Awards are all about celebrating hardworking entrepreneurs, the people who make small towns and big cities thrive," said Premier Christy Clark, who gave each of the winners $1,500 prize money.



Big day for grant cash

Twenty-three local organizations have received more than $732,000 in provincial gaming grants.

The grants support a number of youth programs and services, which is great to see, says Kelowna-Lake Country MLA Norm Letnick.

“As minister of agriculture, I’m particularly pleased to see $4,600 directed to local 4-H activities, which encourage a love for animals and the development of leadership skills.”

Organizations receiving the grants are:

  • Okanagan Boys and Girls Clubs - $191,000
  • New Opportunities for Women (Now) Canada Society - $87,000
  • Clubhouse Child Care Centre - $73,700
  • Central Okanagan Emergency Shelter Society - $66,000
  • Kinsmen Club of Kelowna - $43,000
  • Rutland Elementary Community School Society - $40,400
  • Adult Integrated Mental Health Services Society - $30,000
  • Rotary Club of Lake Country Society - $29,960
  • Kalano Club of Kelowna - $25,000
  • Okanagan Lifetime Networks Association - $18,000
  • Knights of Columbus Council #10781 - $18,000
  • Lions Club of Lake Country Winfield - $17,000
  • Rotary Club of Kelowna - $16,000
  • Archangels Children’s Centre - $14,950
  • Senior Citizens Association of BC #55 - $13,000
  • Daycare Connection Childcare Society - $11,600
  • Cool Arts Society - $6,500
  • Air Cadet League of Canada 909 Peregrine Sponsoring Committee - $6,100
  • Elevation Outdoors Experiential Programs Association - $6,000
  • La Societe de l’Ecole Des Petit Oursons - $5,600
  • Cathedral Church of St. Michael and All Angels Council - $5,000
  • Kelowna District 4-H Council - $4,600
  • Scouts Canada 1st Glenvalley Group - $3,600

Every year, $135 million in gaming grants is distributed to more than 5,000 local non-profit organizations that serve communities throughout British Columbia.



Missing Kelowna man

The Kelowna RCMP is asking for the public's help finding a missing man.

Thirty-one-year-old Greg Bayliss was last seen only yesterday (Feb. 26), but police are concerned for his well-being.

RCMP do not have a picture of Bayliss, but they have provided the following description.

  • Caucasian male
  • five feet 10 inches (178 cm) tall
  • 185 pounds (84 kg)
  • Brown hair
  • Brown eyes

Anyone with information on the whereabouts of Bayliss is urged to contact their local police, or remain anonymous by calling CrimeStoppers at 1-800-222-8477, leaving a tip online at www.crimestoppers.net or by texting your tip to CRIMES (274637) ktown.



Kasugai Gardens reopen

Spring must be just around the corner, because Kasugai Gardens reopen this Sunday.

The popular Japanese gardens beside Kelowna City Hall will be open daily from 9 a.m. to 5 p.m. until the Victoria Day weekend. Throughout the summer months the gardens will be open from 9 a.m. to  8 p.m. until Labour Day.

The gardens provide a tranquil environment featuring traditional Japanese elements, such as stone lanterns, pine trees, a waterfall and pond. The gardens were completed in 1987 to symbolize the friendship between Kelowna and Kasugai, Japan, sister cities since 1981. 

For more information about city parks and public spaces, visit kelowna.ca/parks.



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