Build N K'nections - Wings For Life
Moms In Motion and Tendertales will be pooling their resources to take on various projects. Wings For Life is the first of many official joint endeavors to make a greater difference in our community. We had a benefit party and are still collection donations to send two brothers to Texas for treatment via the VECTTOR. See below to learn more. Donations should be made out to Jungtosa (a 501c3 organization) and mailed to Tendertales @ PO Box 2293 Front Royal, VA 22630.

The Story
When our oldest son, was four, he was diagnosed with Duchenne Muscular Dystrophy. We instinctively knew that our lives had been undeniably altered forever. We had lost control of the most important thing to every parent - the health of your child. Our hearts breaks everyday due to the pain and the stress of feeling like there isn’t anything in your power that you can do. It is so terribly difficult to look at our son and see him cry over not being able to walk and wanting to so badly. The feeling of helplessness that we have is beyond words. Each day, we see him struggle with some of the smallest things that we so easily take for granted. There have been times in which I have dreamed of what it would be like to see my son walk down the hall towards me when I pick him up from school, jump in the shower when we are getting ready to go somewhere or playing school sports with his buddies. These images often play over and over in my head.

Five years ago, God blessed us with our second son. As you can imagine, we were truly devastated to learn the news that he too was diagnosed with DMD. Trent once told that is makes him so sad that his brother is in a wheelchair. Fighting back the tears, I couldn’t help but think that he too might have this difficult road ahead of him.

Though our lives are not simple and the road we travel is not easy, we have faith in the Lord Jesus Christ that one day our rainbow will shine again. We love our boys and cherish each and every moment with them. We will continue to pray for a cure for both of our children and all boys affected by DMD so that no one will ever again have to feel pain of these words written in this letter.
God Bless!
Nikki & James

Duchenne
Duchenne is the most prevalent, genetically inherited neuromuscular disorder worldwide and affects 1 in 3500 young males. This disorder is caused by mutations or deletions that prohibited the production of dystrophin. The lack of dystrophin in muscles of DMD patients leads to the wasting of these boy’s muscles. In Duchenne patients, the regenerative potential of dystrophic muscle fibers diminishes over time, resulting in progressively severe muscle wasting. This loss of muscle mass causes patients to be confined to wheelchairs in their early teenage years and to die by the second or third decade of life as a result of cardiac or respiratory failure. Although the molecular defect responsible for DMD was identified 20 years ago, there is still no effective treatment available for this devastating disease. Doctors recommend daily stretching and the use of corticosteroids that provides minimal short term benefits.

The VECTTOR
There has been considerable interest in the Duchenne Muscular Dystrophy (DMD) community regarding a physical therapy system known as Dynatronic STS, (the new machine is called VECTTOR), invented by Dr. Donald Rhodes, who is located in Corpus Christi, Texas. The VECTTOR Machine, delivers electricity to acupuncture points and is individualized per patient. It appears to slow down the progression of DMD. As there is currently no cure for DMD the goal is to slow down the progression while scientists come up with a cure or viable treatment. Patients must travel to Corpus Christi, Texas. There the family will be trained on and learn to use the VECTTOR. The family will then be able to bring it back to their home and continue treatment.

The Goal
Wings for Life's goal is to raise the money necessary to send these two brothers to TX to begin treatment and then to bring the machine home to continue treatment. The machine itself costs $5000. Of course there will be training and travel expenses. This family has two boys with Duchennes so one machine will be able to help both of them. Please donate to this worthy cause and feel free to check out the update on JR and Trent at either of our websites.

The Team
Moms In Motion
Keri Ayres and Glenda Mikulak met in 2008 as Glenda was serving Keri's son who has a disability. Moms In Motion (MIM) was started by Keri in 2009 as a direct result of Glenda's encouragement and guidance. Moms in Motion, serves individuals with disabilites on enrolled in Virginia Medicaid Waivers. Our goal is to enhance the outcome for all of our clients by learning from them, sharing resources and ever expanding our knowledge. Our primary areas of growth will be advocating in the school systems for our younger clients, assisting young adults with transition to independence, helping our elderly clients to be cared for by the people who love them.
Visit our website at: MomsInMotion.net

Tendertales
Tendertales was created by Glenda Mikulak after she was thrust into the disability world by the challenges facing her son diagnosed with Duchenne. She was “amazed at how widespread the need for assistance really is. Families of adults and children with disabilities are faced with so many pressures. Simply finding resources and knowing how to tap them is not only overwhelming but, at times, can seem impossible. I wanted to do something that would make this process easier and less stressful for individuals and families so that they could deal with learning how to live and function with a disability”

In that vein, Glenda began Tendertales, a disability services company. Tendertales focus is to help identify services that are available to assist people with disabilities and aid with filing the documents required by the various government programs. If we cannot find an appropriate government programs, we search for the resources and means to provide those needs. Tendertales has a strong passion for assisting with equipment and accessibility. We take outdated wheelchairs and replace them with new powered ones when possible, thus giving freedom to individuals who are disabled. We also provide assistance with planning accessibility housing solutions.

Please visit us at: Tendertales.com

Glenn's Story (a young man who experienced Duchenne)
Glenn Mikulak died a very depleted 18 year old boy. However, he lived his 18 years as a dreamer and a doer. He will be remembered for his courage and will continue to be an inspiration. Glenn was funny, persistent and highly intelligent. He had a love for drafting and building including his 8.5 foot long ship made up of over 10,000 K’Nex pieces. Glenn loved sailing. Glenn touched everyone who met him with his ability to be positive and happy while facing such an unfair fate. “Glenn's legacy to all of us is the example of achievement under duress; of hope where hopelessness might seem the answer; of life lived to the fullest under the constant shadow of death.” -unknown

Glenn befriended another boy with Duchenne in Pennsylvania many years ago. This boy's Duchenne was progressing at a faster rate than Glenn's when they met. However, he has been receiving treatment by the VECTTOR for approximately 3 years. The progression of his physical deterioration has slowed. Glenn’s mother, Glenda, was working feverishly to transport Glenn to Texas for treatment in the VECTTOR. Unfortunately, his health had deteriorated to the point that he was unable to travel. Please feel it in your heart to contribute to this worthy cause.
This would be great under the picks of the ships:
"Designing and building is my passion. I try to use all that I have and make the best of it. I anticipate the cure in the future. While it’s getting harder … for me everyday physically, I am doing all I can … I hope I’m an inspiration to other people. This ship will be my legacy.”
– Glenn Mikulak