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Commentary: Trisomy does not mean 'incompatible with life'

"Just like that, because our child had trisomy 13, doctors viewed the situation as impossible."

Recently, I have been reading up on the policy of doctors using the term “incompatible with life” while explaining trisomy to parents expecting children with this diagnosis, specifically trisomy 13 and trisomy 18.

Trisomy occurs “with the presence of an extra third chromosome” which is placed among two strands of DNA, according to Chad Haldeman-Englert, MD, of the Wake Forest School of Medicine. An infant may be born with multiple defects and/or intellectual disabilities. (These could include cleft lip or palate, seizures and extra fingers or toes, according to the U.S. National Library of Medicine National Institutes of Health.

After giving birth to a child with trisomy 13 in June 2014, this topic is very emotional for me.

My unborn son was diagnosed with trisomy 13 when I was 21 weeks pregnant. My husband and I were heartbroken, and we decided to pray as hard as we could and hope for the best.

I delivered our beautiful baby at 36 weeks, and despite low expectations, he lived, and we were able to take him home and give him our love for 23 days.

When we went home, we had hospice care, and the nurses were very caring and had so much hope for our son. It was even suggested for us to take measures to increase his likelihood of survival rather than wait for the inevitable.

However, on the 22nd day, our beautiful baby boy began to struggle with breathing. We took him to the emergency room and were transferred to the regional pediatric hospital. When we got there, we were told that our son was dying. Rather than suggesting we do something to increase his chances of survival, the doctors acted hopeless and suggested that we let him go.

Just like that, because our child had trisomy 13, doctors viewed the situation as “impossible.”

 Hours before our son passed, we held him and kissed him and told him we loved him; we watched him become more and more exhausted as he struggled to oxygenate his body until his life left him.

I’ve done a lot of research and have joined social groups where other parents have faced the same issue and have suffered, and it seems we all feel the same.

A trisomy diagnosis should not mean “incompatible with life.”

These children should be allowed to receive the same medical treatments and be viewed with the same opportunities as others who face severe illnesses.

Ashley Seder is a past Crestview resident and a student at the University of West Florida for social work.

This article originally appeared on Crestview News Bulletin: Commentary: Trisomy does not mean 'incompatible with life'

December ’63 to perform tribute to Frankie Valli & the Four Seasons

December '63, a Frankie Valli and the Four Seasons tribute band, will perform April 11 at a fundraiser concert in Destin.

DESTIN — In partnership with Ocean Reef Vacation Rentals & Real Estate, the Mattie Kelly Arts Foundation continues a year-long celebration of its 20th anniversary with a performance by December '63, a Frankie Valli and the Four Seasons tribute band.

 The concert is 7 p.m. Saturday, April 11 in the Dugas Pavilion in the Mattie Kelly Cultural Arts Village, 4323 Commons Drive W. in Destin.

 The five-member band is named for Frankie Valli’s 1975 hit "December 1963 (Oh What a Night)," which topped the U.S. music charts at No. 3 in 1975.

December ’63 celebrates the charismatic '60s crooner with the unmistakable falsetto voice with such memorable hits as “Sherry,” “Big Girls Don’t Cry,” “Rag Doll,” “Walk Like a Man,” “Can’t Take My Eyes Off You,” “My Eyes Adored You” and more.

Bring a chair, blanket and picnic or purchase dinner prepared onsite from food trucks and local restaurants serving dinner menu options. Bring your own beverages or purchase water, soft drinks, beer and wine at the event.

 Tickets for this benefit concert are $25 for adults or $20 for MKAF members. Children under 12 get in free.  Proceeds will benefit MKAF’s mission to support cultural events and education programs. VIP tables, seating six or eight, are available on a first-come, first-served basis by calling 650-2226.

This article originally appeared on Crestview News Bulletin: December ’63 to perform tribute to Frankie Valli & the Four Seasons

Scrapbooking pro brings inspiration, designs to Crestview

Scrapbookers Peggy Isler, Toni Dugas, Sandy Teets, Rhonda Smith, Sue Sweeney, Jayne Marshall, Shirley Snyder and Linda Norris have new ideas for scrapbook creativity following a weekend workshop with renowned professional scrapbooker Beatriz Farqunar-Guzman, bottom row center.

CRESTVIEW — Serious scrapbookers are applying new techniques and ideas to their projects after receiving inspiration from a noted scrapbooking expert.

Beatriz Farqunar-Guzman recently visited A Scrap in Time in Crestview to share tips and design suggestions with local scrapbook artists — and some who came from out of town and out of state for the event.

Find fun scrapbooking ideas at Amazing Grace, Designs by Beatriz>>

“She has followers from everywhere,” local scrapbooker Terry Maloney said. “People just love her stuff. She can just look at paper and she knows just what to put on it. It’s amazing.”

Farqunar-Guzman started her scrapbooking career upon the collapse of her international commercial business in the wake of the 9-11 terrorist attacks, Maloney said.

While in Crestview, Farqunar-Guzman conducted scrapbooking workshops and produced her own designs.

“She designed 210 two-page layouts, which are for sale at A Scrap in Time,” Maloney said, adding that local scrapbookers at the workshops helped produce them as kits.

A Scrap in Time owner Lisa Byers said scrapbooking is a lot more than fancy paper prints, creative cutouts and photos.

“It’s a place to create lasting memories,” she said. “Scrapbooking warms the heart and gives us something to share for the memorable times and events in our lives.”

“Scrapbooking is a method for preserving personal and family history,” Maloney said.

Maloney said Farqunar-Guzman’s custom kits range between $20 and $25 each. The shop is at 151 Brock Ave. behind Dominoes Pizza.

Email News Bulletin Staff Writer Brian Hughes, follow him on Twitter or call 850-682-6524.

This article originally appeared on Crestview News Bulletin: Scrapbooking pro brings inspiration, designs to Crestview

April 20-25 named Relay For Life Week in Crestview

2015 Relay For Life committee members Melanie Fullerton — standing in for 2015 chair Megan Bowersox — and Loney Whitley flank Crestview Mayor David Cadle. April 20-25, 2015 is American Cancer Society Relay For Life Week by Cadle's proclamation.

CRESTVIEW — Mayor David Cadle proclaimed April 20-25, 2015, American Cancer Society Relay For Life Week. 

Relay For Life, an ACS fundraiser, is scheduled for 6 p.m. April 24 at Shoal River Middle School. 

Sponsored teams of organizations, churches, friends and family members annually spend one night camping out, take turns walking and running on a racetrack and remember those diagnosed with cancer and those who have died from it.

It's still not too late to form a team or be a sponsor. Contact Loney Whitley, 603-3500, for more information.  

Learn more on Relay For Life Crestview's Facebook page>>

This article originally appeared on Crestview News Bulletin: April 20-25 named Relay For Life Week in Crestview

4-H summer camp set at Camp Timpoochee

This summer, when kids get out of school and it is time to find something fun to do, why not come to Camp Timpoochee?

4-H Camp — June 15-19 at Camp Timpoochee, located in Niceville on Choctawhatchee Bay — offers several activities for one week. 

Line dancing, marine science experiments, kayaking, snorkeling, arts and crafts, archery, team building and camp fire activities have been parts of past camps.   

Camp Timpoochee offers a lifetime of memories, friendships, life skills, team building skills, and a great week of fun.

We are accepting applications for campers, counselors-in-training, and youth counselors ages 14-18. You do not have to be a 4-H member to attend Camp Timpoochee with us, but if you go and experience what camp and 4-H have to offer, you might think about joining one of our clubs. 

If you have any questions about the 4-H program, please do not hesitate to call the Okaloosa County Extension office at 689-5850. 

WANT TO GO?

Admittance to 4-H Camp at Camp Timpoochee is limited. See http://okaloosa.ifas.ufl.edu/4hy/ or visit the Okaloosa Extension Office, 3098 Airport Road Crestview, for an application.

Misty Smith is an agent at the University of Florida/Institute of Food and Agricultural Sciences' Okaloosa County Extension office in Crestview.

This article originally appeared on Crestview News Bulletin: 4-H summer camp set at Camp Timpoochee

Fundraiser set for Crestview baby

A Boston butt fundraiser is planned for Nathaniel Bowersox, born Feb. 5.

CRESTVIEW — Duke it Out's Relay For Life team will have a Boston butt fundraiser for Nathaniel Bowersox on April 4. 

Nathaniel, the son of Megan and Daniel Bowersox, was born prematurely Feb. 5 — almost a month before he was due. His second night at North Okaloosa Medical Center, nurses determined his stomach was distended and referred him to Sacred Heart Hospital in Pensacola.

"He had what is called meconium ileus — basically, his first bowel movement got stuck in his small intestine, causing it to droop, twist and rupture," Megan, said. "Thankfully, we all have a lot of intestine to work with … a surgeon had to remove part of his small intestine to remove the blockage, all before he turned three days old.

"He now has part of his small intestine poking out of his abdomen with a colostomy bag attached to the end. He will have to undergo a second surgery to piece his intestines back together."

Duke It Out's team scheduled the Boston butts fundraiser to help cover Nathaniel's treatment expenses. Megan is the 2014 and 2015 Crestview Relay For Life chairperson.

The Boston butts cost $30 each and can be ordered by calling Loney Whitley at 603-3500 or 537-4654.  The butts can be picked up at the Crestview Publix from 4 to 5 p.m. April 4.

This article originally appeared on Crestview News Bulletin: Fundraiser set for Crestview baby

Baker alumna's film comes closer to worldwide release

"Lake Eerie" writer Meredith Majors (left) — pictured with Annemijn Nieuwkoop — says she and her husband, Chris, are negotiating release dates with distributors.

CRESTVIEW — The tiniest things can inspire writers. For Baker School alumna Meredith Majors, inspiration arrived via locket.

Meredith and her husband, Chris, were looking for a project for their production company, Savage Beast Films, when inspiration arose.

“One day, while heading to work in Los Angeles, I was sitting in traffic, twirling my locket/necklace around my finger," she said. "I stopped and looked at my locket, thinking about the idea that became ‘Lake Eerie.'

“When I got to work, I rushed to write down all of my thoughts and ideas on paper," Meredith said. "I spoke to my husband about it, and we decided to drop everything and make this happen.”

Meredith plays Kate Ryan, a widow who experiences unnatural phenomena when she moves to a lakeside home. Chris directed and acted in the film, which also features Lance Henriksen, of “Aliens” and “Terminator” fame; wrestler and actor Al Snow; Betsy Baker, from “The Evil Dead”; and Marilyn Ghigliotti, of “Clerks.”

Behind the scenes is Robert Kurtzman, Master Special FX supervisor, who worked on “Predator,” “Tremors" and “Scream," and Harry Manfredini, who has more than 150 composer credits, including “Friday the 13th” films, “House” and “The Hills Have Eyes II.”

The Majorses are negotiating the film's release date with distributors; the couple will know more in a few weeks.

They are grateful for backers who made that final step possible. Contributors donated more than $17,000 for post-production on the fundraising website Kickstarter.

"The best part about post-production is seeing the film in different stages, and how each stage makes the film better and better," Meredith said. "The worst part is trying to be patient, because it takes time. The challenge of film-making is working with multiple artists, and schedules.

"It feels like a miracle when it is completed, because so many ideas and egos are involved with the process."  

HAUNTED HOUSE

In the case of Savage Beast Films' "Lake Eerie," art imitates life in some ways, according to Meredith Majors, the film's star, writer and producer. 

Her husband's family owns Lake House, the 1918 LaSalle, Mich., home where much of the movie's action takes place. Something seemed strange about the place, so the couple asked experts to investigate.   

 “Prior to shooting 'Lake Eerie,' we had three groups of paranormal researchers investigate the house; and they caught EVPs (electronic voice phenomena), some photos and video of a 'shadow figure,' sudden temperature changes, and other unexplained occurrences," Meredith said.

“While shooting 'Lake Eerie,' some of the crew were skeptical of the house being haunted," she said. "However, one night some crew were in a room with no windows open, and the closet door slowly creaked opened and then slammed shut on its own. Our script supervisor ran down the stairs screaming.”

WHAT'S NEXT

Savage Beast Films is in preproduction on its next film, “Echo of Evil.” Meredith and Chris Majors have been talking about a supporting role with Robert Englund, who played villain Freddy Krueger in the "Nightmare on Elm Street" franchise. "There’s exciting stuff coming," Meredith Majors said, “but we do more than just the horror genre."

ONLINE

•http://lakeeeriemovie.wix.com/lakeeerie

•www.facebook.com/LakeEerieMovie

This article originally appeared on Crestview News Bulletin: Baker alumna's film comes closer to worldwide release

HAPPENINGS: More adventures from California

Trains have come a long way from the Old West days.

While I was in California, I had a grand adventure taking the Amtrak Surfliner from Anaheim to San Diego. It was roomy, and the padded seats were a nice width.

The regular car, which I rode in, had large windows so you could see along the coastline. There is a business class, which looks like a mobile office; it has tables upon which to work, free WiFi and better lighting, along with complimentary snacks. The food car had nice tables to relax around; coffee, tea and other beverages; and sandwiches, salads and snacks.

I think it took about 30 minutes longer to take the train than to drive, but it was much more enjoyable.

Once we got to San Diego, Jim, my husband, and I went to Tuna Harbor Park to see the aircraft carrier, USS Midway in the San Diego bay, along with the Bob Hope Memorial. Also in the park is the 25-foot "Unconditional Surrender" statue. (That's the World War II sailor kissing the nurse at the end of the war.)

We then went to Seaport Village, of which I had fond memories — but alas, no longer. We were there about 75 minutes and it cost $16 to get out of the parking lot; no attendant, just a credit card machine. I used to love the old carousel and the charm, but nothing is worth that amount of money to park.  Shame on the city of San Diego for taking advantage of tourists!

On a positive note, California excels at Mexican food. We ate several times at Fonda Don Chon, which was always extremely busy. Some of the best Mexican food I have ever tasted. They had a wonderful buffet at lunch with all-you-can-eat guacamole that was scrumptious. I told the owner he would make a killing here — the food was that outstanding.

Do you have any favorite restaurants? What is your favorite type of food? Share your thoughts about favorite local dishes, and see photos from Janice's trip, at www.crestviewbulletin.com/lifestyle.

Janice Lynn Crose lives in Crestview with her husband, Jim; her brother, Robb; her two rescue collies, Shane and Jasmine; and two cats, Kathryn and Prince Valiant.

Email listings of upcoming events to NorthOkaloosaHappenings@gmail.com.

This article originally appeared on Crestview News Bulletin: HAPPENINGS: More adventures from California

Tickets on sale for REVfest

FORT WALTON BEACH — Advance tickets are on sale for the 3rd Annual Okaloosa REVfest Art & Music Festival.

The event — noon to 2 a.m. Saturday, March 21 at KC's Sandbar, 190 Miracle Strip Parkway in Fort Walton Beach — will bring together 14 bands performing on two stages throughout the day, as well as multiple vendors with original artwork available for purchase.

Heritage, New Earth Army, Displace, Lucky Costello, The Owsley Brothers, Treehouse, Captain Green, Post Pluto, Flat Land, Continuum, Tribe Zion, Sway Jah Vu, Soul'd Out and The Good Lookings will perform.   

A limited number of early bird tickets are available for $5 at www.okaloosarevfest.com. General admission tickets are $10 and will be available the day of the event. A portion of the proceeds will benefit the 7th Special Forces Association. 

Visit www.facebook.com/OkaloosaRevFest, or contact organizer Mike Flatau, 508-5322 or okaloosarevfest@gmail.com.

This article originally appeared on Crestview News Bulletin: Tickets on sale for REVfest

THIS WEEKEND: HIV awareness takes focus in Crestview

CRESTVIEW — HIV awareness takes center stage on Saturday.

“Divine Love Begins With Me" is scheduled for 6 p.m. March 7 at Carver Hill School Center, 461 School Ave., Crestview.

Speakers will include Krissy Morgan, AIDS activist, and Dr. Juan Mosley, of FAMU, among others.

Pop – A – Soul will provide music.

Cost: $10 per person; $18 per couple. Details: Tonsiaweda Hayes, 621-4187.

This article originally appeared on Crestview News Bulletin: THIS WEEKEND: HIV awareness takes focus in Crestview

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