Fight SMA Chapters: Dylan's Friends/FightSMA Utah
Amy and Darren Strebel
Dylan's Friends/FightSMA Utah
P.O. Box 13782
Ogden, UT 84412
(801) 782-5525
(801) 389-4573
Email: Click here to email Dylan's Friends
MySpace: Click here to visit the Dylan's Friends MySpace page
Ongoing Events:
FightSMA Necklaces, Bracelets, Anklets, and Bookmarks These beautiful and colorful crafts are hand-made using a complimentary combination of glass beads, silver beads, and clear Swarovski crystals. Bracelets include a bead with the word "cure" printed on it, a cause ribbon, a FightSMA charm, and a lovely little angel to symbolize the children affected by SMA. These will add a splash of color to any outfit or reading experience, and act as beautiful reminders of our cause. Colors and design may vary slightly as each one is an original work of art. |
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The FightSMA Necklaces, Bracelets, Anklets, and Bookmarks can be purchased by |
Past Events:
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| Porch Pounders Dan Weldon (left) and Brad Wheeler |
"Blues" SMAsquerade 2007
Date: October 20, 2007
Time: 7:00 - 11:00 PM
Place: First Presbyterian Church 880 28th St., Ogden, Utah
Dylan's Friends held its first SMAsquerade on October 20, 2007, and despite a sudden winter storm had great attendance! About 200 people attended the event and about 20 others volunteered their time, efforts, and money to help pull it off. The southern food catered by local restaurant, Peddlers, was thoroughly enjoyed by all! And local band, the Porch Pounders, entertained the crowd with cover songs and original blues compositions, and even donated their CD's to the auction! Thirty-two local businesses were sponsors of the event and the auction featured over 100 items - some of which were sold for far more than anticipated, helping the auction to bring in $3,913.00!!! "SMA Angel" jewelry was also sold at the event and these sales alone made $235.
The whole event was a huge success and with everything combined - ticket sales, beverages, donations, the auction, and our jewelry - Dylan's Friends raised $4,832.00 for research and a cure for SMA!!
We want to thank all our volunteers, and everyone who came and made the event a success! Look for information coming soon about next years SMAsquerade!
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To the left, Amie Thorne and Amy Strebel at the Ogden Farmer's and Art Market on Historic 25th Street. Amy could be found selling FightSMA necklaces, bracelets, anklets, and bookmarks at the Market every Saturday from July 14 to September 22. Photo by Jamie Lampros, correspondent for the Standard-Examiner. |
Teleperformance employee wristband sale
On August 9, 2007, Dylan's Friends accepted a check for over $750 from Teleperformance in Salt Lake City, Utah. The employees of Teleperformance showed their support for the fight against SMA by purchasing FightSMA wristbands during the previous couple of months. Thank you to all our friends at Teleperformance!
Yard Sale
September 30, 2006
Ogden, Utah
Great success! Raised $840 for FightSMA Utah.
Press:
Parents join fight against genetic disease: Standard-Examiner (October 7, 2007)
Dylan's Story
Dylan Thomas Strebel
October 6, 2005 - May 1, 2006
SMA type I
In September of 2004 my husband, Darren, and I made the decision to have another child. We thought that it would be so nice to have another person in our family and for our daughter Gabrielle to have someone to grow up with. On Valentines Day of 2005, I told Darren that I was pregnant. We were very excited and looking forward to meeting this new person. The next 9 months went as smooth as could be with no complications, other than mild heartburn on my part. On October 6, 2005, Dylan Thomas arrived into the world and our hearts.
From the very first he was so sweet, easy going, and peaceful. Everyone commented on how calm and beautiful he was and we all noticed how he had his dad's chin and looked so much like his sissy. Gabrielle on the other hand took some convincing on how great he was, but once she warmed up she relished the role of big sister. That October was the warmest on record and Dylan and I enjoyed every minute by going for walks to enjoy the sunshine or look at the leaves. We had just enjoyed our first Thanksgiving with Dylan and I had just been back to work, when we took Dylan in for his routine 2-month check up. The night before his appointment Darren and I danced in the living room as we put up the Christmas tree and then peeked at our perfect sleeping babies. However, December 9th it all changed as our pediatrician was very concerned of Dylan's muscle tone and lack of strength and sent us immediately to Primary Children's Hospital.
Over the course of the next 3 days, we watched helplessly as Dylan endured countless blood tests, physical tests, MRI's, CAT Scans, and EMG's, and a trip to the ICU. We also prayed more than we had in our entire lives that this was just a horrible mistake and went through more Kleenex than you can imagine. You need to understand that Darren and I had no clue that anything was wrong: Dylan was moving, he could coo, he could smile, and his face, particularly his eyes, was always expressive. Then on December 12th, the bottom of our world fell out. Our neurologist, Dr. Swoboda, told us that Dylan had SMA or Spinal Muscular Atrophy Type 1.
Darren and I were devastated by the news, as you can imagine. Here we were one minute thinking our lives were perfect, only to be told that our son's life could be measured in days, but definitely would be only a few months. All our dreams, hopes, and wishes for this wonderful person were crushed in an instant. Everyday now became a priority of helping him have quality of life for the time he had left and trying to enjoy every minute that we were blessed with his presence.
We were fortunate to take him home a week before Christmas and immediately his bedroom took on the look of a mini ICU. We had machines to help him cough, suction machines, a respirator, a machine to help us feed him when the time came, machines that monitored his oxygen levels, and then finally oxygen tanks and an oxygen machine. The time in the hospital had weakened Dylan, but caring for him was not much different at first. We were fortunate in that we could hold him for hours, our families could hold him, and we could just spend time together. Then, he lost the ability to swallow and we had to insert a feeding or NG tube through which to feed him. Because of the feeding tube and his weakening condition, he also lost the ability to make noise, cry, or coo. A little while later he started needing the respirator for naps as he would get distressed and very sweaty from working so hard to breath. Fortunately, I was still able to take him to our bed and lay him down next to me at bedtime. I loved falling asleep looking at that sweet face smiling at me with those soulful eyes and I hope that he loved it too. Soon after he started needing the cough assist machine several times throughout the day and we had to have the suction machine near him at all times in case he aspirated or choked on his saliva. A few weeks later, he had to be on the respirator all through the night and lost the ability to move his arms or legs.
Eventually, the only times we got to hold Dylan was when we were moving him from the crib to our bed or vice versa; believe me we savored those few moments. Then in early April, as we celebrated his 6-month birthday, he got to the point where we could not have him off the respirator for more than 2 to 3 hours at a time and only then with constant oxygen through his nose. By this time, he sadly lost his ability to smile. SMA is a very cruel and vicious disease, losing the ability to move is bad enough, but his smile too?! When we eventually lost Dylan he was to the point that he could not be on the respirator and balance his oxygen levels, and yet could not be off it without getting into distress. We were blessed that we got the chance to hold Dylan and tell him how much we loved him as he passed from our lives on May 1, 2006.
Most parents with infants worry about waking up at 3 a.m. and having to settle or feed a crying baby. Darren and I worried about waking up to alarms beeping and having to save Dylan’s life. There were several times when both of us thought that we would not be able to, but this tough, brave boy would fight for just one more day. It is hard to describe the constant panic that you feel every moment of everyday. It is heart wrenching to watch your child go through such a horrible de-progression and watch this bright mind be trapped in an uncooperative body. Darren and I had many moments where we thought of all that we would miss with Dylan, but mostly what he would miss out on. Simple things like walking, eating solid food, riding a bike, fly-fishing, going to school, feeling the ocean on his feet, falling in love and having children, even just being able to laugh. But then this wonderful, beautiful, bright boy would look at us with the greatest, most loving eyes we have ever seen and we would think of everything he could do, like making us slow down and enjoy the simple, quiet moments. He made us appreciate the beauty around us, within us, and in others. Most of all he could brighten a room with just one look, or one smile. I honestly know very few people who can do that.
Dylan truly was the most courageous, peaceful, sweet person that we have ever had the pleasure of knowing. He really did teach all of us to take each day as it comes, to be patient, not to take anything or anyone for granted, and finally to realize that it is not the amount of breaths you take, but truly the moments that take your breath away that matter. We are better people for having known him, we are so honored and blessed to have been his parents, and we will miss him everyday. We know that he is in a better place and he is free from the chains that trapped him in this life, and for that we are thankful.
We miss you our brave boy and we love you, now and forever~
Daddy, Mommy, and Sissy