Gavin Edwin was welcomed into this world on July 29th, 2009! He was a healthy 9lbs and was a happy, laid back little boy from the start. His older brother Caden was in awe of him, along with the rest of us! Even before Gavin was born we talked about all the things we were excited to do together. Caden was going to teach him how to play baseball and how to do wheelies on his bike. Briten was excited about going on snowmobile and hunting trips with the boys, and me, I was just excited for them to grow up with each other and play in the mud, wrestle around, be mischievous, and just be boys!

The first 6 months with Gavin flew by; he rolled over at 3.5 months and was sitting unassisted at 5.5 months. Around 7 months we noticed he didn’t like to bear weight on his legs. He didn’t really jump in his jumper he just kind of bounced. I am not sure I would’ve questioned it if he was my first, but because I had Caden I knew it seemed odd.I asked his pediatrician about it at his next check up, they were not concerned but said we could try some physical therapy to see if that helps. They said he had a bit of low muscle tone but should catch up with therapy. For the next 5 months I went to many doctors and neurologists, they all said the same things. He will catch up, it’s just low muscle tone, continue physical therapy. When he turned 1 year old he still was not crawling. I made an appointment with one of the top pediatric neurologists in Minnesota to finally put my worries to rest. I decided that if he said the same things then I needed to finally trust them, after all, they’re the doctors.

Our entire family was in awe of Gavin from the day he was born and still are today! Gavin is a lovable, kind, and silly little boy who loves to color, dance and play with his big brother. Each day we get the pleasure of watching our son and little brother grow, change, play and enjoy life!

On September 28th, 2010 our lives changed forever. We were told that our overall healthy 13 month old son was probably not going to live past the age of 2. Hearing the word’s “I’m so sorry” over and over will forever be in our minds. All the dreams we had for our kids and our family seemed to be shattered in a matter of seconds. This was the day our youngest son Gavin, was diagnosed with Spinal Muscular Atrophy. SMA is the # 1 genetic killer of children under 2. It is a progressive disease that weakens the muscles used for crawling, walking, swallowing and even breathing. The mind is unaffected. About a week after his diagnosis we decided we needed to pick up the pieces and start a new dream. We were not giving up HOPE!

We jumped into finding as much info as possible and ways to help Gavin. One of the main things we came across was how important it was to get Gavin standing. Standing improves bone density, bowel function and breathing just to name a few. We talked to his physical therapist and she suggested we get a stander to help support him and get him standing. The first stander we tested was the EasyStand Bantam. We fell in love immediately! We loved the sit to stand feature because we could put Gavin in it lying down or while sitting up, and get him into it with only one person. I stay home with him all day so it was critical that I could get him in and out on my own, even as he gets bigger. It also has a ton of growing room so we will be able to get good use out of it. The Bantam very easy to adjust, the great color system helps us get the adjustments right. We also love the tray that we ordered as a add on. It gives Gavin the ability to play play-doh, drive his trucks, and color pictures while standing. We try to have him in his Bantam for at least 30 minutes everyday. We have noticed big changes in his bowel function and breathing from standing daily. When he is sick we even do his nebulizer treatments while standing because he takes better breaths.

Thank you Cassie for sharing Gavin’ story and bright smile with us!

Do you have a story to share about your little one? What did you enjoy most about reading Gavin’s story?

I’ve been surfing the internet on all things “disability” for over 15 years, and I thought I’d see it all, witnessed all the awesome things I’d ever need to see regarding people who use wheelchairs, that every barrier has been crossed. I rarely gave a thought to the burgeoning population of young people with disabilities hitting adulthood as we speak, what their untapped energy is capable of. Then I came across Tess Daly.

A 22 year old style-obsessed Brit with Spinal Muscular Atrophy, Tess’ goal is to be one of the world’s first wardrobe stylists that just happens to use a wheelchair. How cool is that? She attends Sheffield Hallam University and is working on a degree in Image Consultancy and Fashion Styling. I absolutely love that she’s determined to get into this visual, typically not disability-sensitive industry.

The more people with disabilities who break into these type of industries, industries we have yet to wriggle into, the better for the world.  It’s all about just getting used to us. And we need to be everywhere we possibly can. Tess maintains this really fun blog where you can follow the twists and turns in her career: In life, everyone needs a passion…and I choose fashion! And you can become a fan on Facebook of Tess’ work (and see photos of her work) here: Tess Daly – Wardrobe Stylist.

On top of her exciting career, Tess and a few other fashionable British women with severe disabilities have started this amazing campaign (they could seriously star in their own Sex & The City show). Their campaign goal in her own words: “To raise awareness that people with severe disabilities can be sexy, display individuality and follow fashion just like anybody else.” It’s called Disabled & Sexy and these girls are seriously some of the most fashionable girls in wheelchairs I’ve ever seen. They’re perfect examples of how badass and determined the current disabled youth of our world are. Watch out world, they may be hungrier than even you and I were.

You know, Tess reminds me of the energy and fire I had 10 years ago. Fresh blood is a very good thing. With people with disabilities coming of age like Tess, youth with the drive to take on even the most loftiest goals, the future is blindingly bright for people with disabilities.

Photo courtesy of Josette

Chloe, SMA: What looks like a button and goes beep, beep? Why Mom's nose of course.

Abbygail, CP: Mirror, mirror on the wall, who's the tallest of them all? Abbygail of course, thanks to her EasyStand Bantam.

For more great photos people using the EasyStand Bantam and other EasyStand standers, visit the EasyStand Flickr page.

Amyotrophic Lateral Scelrosis

Cerebral Palsy

Chronic Obstructive Pulmonary Disease

Developmental Disabilities

Muscular Dystrophy

Friedreichs Ataxia

Guillain Barre Syndrome

Hydrocephalus

Multiple Sclerosis

Neuromuscualr Disorders

Paralysis

Scoliosis

Spina Bifida

Spinal Cord Diseases

Spinal Cord Injuries

Spinal Muscular Atrophy

Spinal Stenosis

Stroke

Traumatic Brain Injury

What is NRRTS?
NRRTS is a professional association supporting individuals who provide Complex Rehab wheelchairs and seated positioning systems for people of all ages and diagnoses who have postural or mobility deficits. These professionals offer quality care and service using specialized knowledge, training, experience and skills to match the consumers’ needs to appropriate equipment. For more information on NRRTS or to find a NRRTS certified supplier near you, go to www.nrrts.org.

Altimate Medical is proud to be a Corporate Friend of NRRTS.

The first photo shoot was at an alternative care center where adults with disabilities gather to work on skills, build friendships, learn, and of course, have fun.  Our model, Tori, is a 23 year old woman with Cerebral Palsy.  Tori is usually lifted into her stander with a two person transfer.  The staff at the center used a patient lift to transfer her to/from other surfaces, but not into her stander.  They said it wasn’t possible and that they don’t use the patient lift with standers.  This particular photo shoot was with the new Swing Away Front for the Evolv. After several minutes of us explaining to the staff, that “Yes, it is possible” to transfer Tori into the Evolv using a patient lift, they agreed to try it.  The front end and kneepads swung away, the Shadow Tray flipped back, and the whole front of the stander opened up.   Tori went from the patient lift to the stander in less than a minute.  What was amazing to me, was seeing and hearing the total mind shift of the staff.  As Tori was transferred into the Evolv, the staff said things like,  “Very cool…I’m very impressed” and “That’s nice…very slick” and “Very user-friendly”.

Our next photo shoot was at the home of Cayden, a little boy with a form of Muscular Dystrophy, (Spinal Muscular Atrophy Type II) who uses a Magician everyday at home.  We brought the new EasyStand Bantam with the Supine option.  Two really great things happened when Cayden stood in the Bantam.

We noticed while eating lunch with Cayden and his family, that when he sat at the dinner table in his wheelchair, he sat lower than everyone else, and looked a little bit uncomfortable. We put Cayden into the EasyStand Bantam and removed the Shadow Tray. Mom pushed him up to the dinner table and  lifted him into a slight anterior tilt position.  Now at everyone else’s height, he could see his family, and was in a better position to eat independently!

The other really neat thing that the Bantam did for Cayden, was allowed him to rest in the supine position.  Cayden’s mom is great about getting Cayden into his stander every day, but his diagnosis of  SMA makes him tire easily.  Cayden also has some flexible knee contractures, so he cannot stand totally upright. The Bantam’s sit to stand function allowed Cayden to stand at a nearly upright standing position that he could tolerate.  Then we took Cayden back down to anterior tilt sitting position, and then tilted the stander into a supine position.  This was a great resting position for Cayden, because he could relax his muscles and lay back while being supported.  We could tell how he really felt by the “Aaaaahhh” he let out and the smile on his face!

Have you had a chance to try the new Evolv with Swing Away Front, or the EasyStand Bantam? Could these features be helpful to your child or clients?

Isabel standing in the EasyStand Bantam, a sit-to-stand & supine stander for kids.

If you are a parent, grandparent, or pediatric therapist looking for information on standing, this article covers all the basics. “Stand Up! The benefits of standers for children are clear” was featured in the January issue of Quest Magazine. Writer, Kathy Wechsler, talks about every aspect of standing: when to stand, health benefits, types of standers, finding the right stander, and funding for standing frames.

Through out the article you will find information on several different types of standing devices, photos of kids using them & links to manufacturers who provide that standing equipment. This information is great, but the best part is the quotes and advice from physical therapists, suppliers & end-users who use the standers! Morgan Fritz is a 4th grader with SMA (Spinal Muscular Atrophy) who uses a mobile stander. Sue Fritz, Morgan’s mom, says “kids think her stander is cool, which makes Morgan feel better about needing it. Plus she’s on the same level as the kids when she’s standing,” says Sue. “Nobody’s looking down at her, so her confidence level is up too.”

In the article, Kathy mentions how important is it to know what is out there & work with a therapist to find the stander that best fits your child. “Parents wouldn’t buy their children shoes that don’t fit,” Mary Fournier, PT, comments in the article, “Why should buying a stander be any different? I always recommend that a child be evaluated by a physical therapist before being placed in a stander.”

Take a few minutes to read this standing article in Quest Magazine published by the MDA-Muscular Dystrophy Association.

What part of this article did you find most useful? Do you have any advice for others who are evaluating standing frames?