Click the image below to learn more about SMA Research at Towson and or make a gift of financial support.
Max is the face of SMA research at Towson! We are very pleased to have participated with Towson University's SMA Tiger Research Team in 2016 and are looking forward to new breakthroughs in 2017!
Click the image below to learn more about SMA Research at Towson and or make a gift of financial support.
We're FINALLY ready to show off Max's amazing new powerchair!
The Permobil K450 is not the chair we thought Max was getting...it's even better! Here's how it happened.
Summer 2015: Max's 2nd birthday. We reached out to friends and family to help us get Max a power wheelchair which would enable him to drive himself. At the time, we had completely spec'ed out an order for a Permobil M300 (midwheel drive). We thought the paperwork was all submitted, but to our great surprise, it turned out we still needed a few more signatures before applying to insurance. One of those signatures was from Max's physical medicine doctor, who surprised us further when she said that she wasn't ready to sign off on it yet. She had two concerns: (1) that insurance would deny because Max was too young to safely operate a powerchair and (2) that Max would be better off with a different model than the one we were applying for.
Disappointed, we set about gathering more evidence to respond to issue #1. We had already done several trials where therapists came to our home with a special motorized platform that Max could "drive" while secured in his custom seat. It took a lot of coordination to schedule these appointments, and Max didn't really have a way to practice beforehand. We found that the video clips from these trials might be less than convincing to someone worried about safety. Furthermore, it takes a lot of learning to find a control method that works. We were worried that Max might be unfairly penalized for poor performance due to controls that weren't well-suited to his abilities (e.g. joysticks, whereas Max does better with a switch) or age-level (imagine a single switch with a complex timing synchronization requirement, like "when the arrow on the screen points right, click the switch to go right").
We set about trying to build something that would let Max practice at home. A month later, we had a prototype for controlling a power wheelchair: two switches to go three directions (right to go right, left to go left, both at the same time to go forward).
Just as we started working on an idea for adding motors to the indoor base of Max's adaptive seat, we were contacted by Lollipop Kids Foundation with some amazing news: they had a power wheelchair in their equipment closet (a Permobil C300) which would be perfect for Max!* This began a few more months of investment: replacing batteries, experimenting with various controls and head supports (some borrowed, some purchased out-of-pocket), getting the wheelchair properly adjusted just right for Max, and getting Max accommodated to using it. By the beginning of 2016, we actually had Max driving himself around our first floor in that powerchair.*
Max's physical medicine doctor was very pleased with the evidence we had generated for Max being able to safely operate a power wheelchair. But she urged us to take a look at a different model, the Permobil K450, because its unique design allowed the chair to lower all the way to the floor, and she felt this would be best for him developmentally. At first, we were skeptical. To support this lowering-to-floor feature, the K450 is a rear-wheel drive, which makes it harder to anticipate turns properly and challenging to get in and out of tight spots. Wasn't Max being able to drive himself easily more important that being able to lower himself to the floor?
We started asking around the SMA community. At first, it seemed that very few kids with a diagnosis of SMA type 1 were being recommended to get a Permobil K450. This increased our skepticism. Finally we found one family whose daughter had a K450. Their glowing review of the chair really helped to change our viewpoint. We decided to see for ourselves and scheduled the equipment company bring the chair out to our home to try it in various positions.
While the K450 was 2" wider than the C300, it still fit in our van the way Max's stroller did. However, there was no doubt that we would need to put a second door into Max's room (something we had already talked about) to get the chair in and out. Also, the handrail on the back of the K450 appeared to be an ideal mounting point for Max's many machines (something that had been a real challenge with the C300 and would not be any different with the M300). We decided to go for it. And so we spent the rest of spring and summer of redoing paperwork, sending emails, waiting, garnering more doctors' signatures, and even more waiting...
On September 15, we got the amazing news (via a letter from our health insurance) that Max's powerchair had been pre-authorized for purchase. The order was placed, and delivery was scheduled for mid-October.
The chair was delivered pre-adjusted for Max. However, there were still plenty of tweaks that needed to be made. The biggest task by far, though, was fitting all of Max's machines onto the chair. Amazingly, it only took one late night -- plus a few therapist and technician followups to "tighten up the screws" -- to get all the machines mounted onto the chair in a way that was fit for travel and convenient for caregivers. (This was no doubt due to the many lessons learned and accessories acquired for Max's Zippie Voyage stroller, his Permobil C300, and his "dune buggy" beach wagon!)
It's hard to put into words how amazing our first outing with the Permobil K450 was. We took Max to the birthday party of one of his friends. At previous birthday parties, we tended to pick a spot where Max could see all the action and settle there (because his stroller was heavy to push around and also kept him high off the ground). This time was different. With just a tap of the joystick, we were able to move Max right up into the action. It felt so empowering to us as parents to be able to lower him down to the same level as his friends. He sat next to the kids picnic table while they all ate brunch, and then he rode over to the sandbox where some other friends were playing.
At the end of the party, the kids ran to play in a pile of leaves. "Do you want to play in the leaves?" we asked Max. When he indicated yes excitedly, we drove his K450 straight for the leaf pile. One of the kids threw some leaves at Max, and he loved it, so then all his friends started throwing leaves up in the air around Max, while he just laughed and laughed. When we finally had to go, Max cried; he didn't want the fun to end. Later that day, he couldn't stop talking about playing with his friends in the leaves and his new chair.
Thank you so much to everyone who pitched in to help us make this possible to Max. Major thanks to Max's therapists who made numerous visits to ensure that everything was the way it needed to be. And a heartfelt thanks to the team at NuMotion, whose dedication to doing everything necessary to get Max his chair (and patience with our weekly email ping, much like a parent listening to their child ask over and over: "Are we there yet?") all came out justified when the chair was approved by our insurance on the first try.
To other families of children with special needs working their way through the arduous process of ordering and getting insurance approval for a power wheelchair: we hope our story is helpful. If you have any questions, please don't hesitate to contact us through this website. We especially want caregivers of trached and vented kids with degenerative neuromuscular diagnoses to know that the K450 can be an ideal platform for "on the go" living when your child's life includes an array of medical machines.
But don't take our word for it. Without further ado, here is the final product: Max's Permobil K450, "fully loaded."
Coming in 2017: Max driving his powerchair himself!
Bonus: we got the K450 just in time to incorporate it (and its movable tray) into Max's Halloween costume. Presenting...the Amazing Max-stro!
We've had some amazing nurses over the last two years. Unfortunately, we've suddenly found ourselves desperately short on nursing coverage. Our nursing agency, APNT, Inc, is working night and day to locate some new nurses in the MD/DC/VA area to work Max's case. However, we decided to add our own personal touch in hopes that we might locate some great new nurses through Max's social network!
MAX IS LOOKING FOR an LPN or RN to handle the following kinds of Max-specific duties:
These videos shows a sampling of Max's daily activities:
For more pictures and videos of Max's ongoing adventures, you can check out his Facebook page.
If you're a nurse in the MD/DC/VA area and would like to hang out with Max a few days (or nights) a week, please fill out the application at APNTinc.com!
After you've submitted your information, you can call APNT at 301-617-0083 to let them know you're interested in working on Max's case. (Be sure to mention this blog post!)
Check it out -- Max's new home automation setup was featured on the Samsung SmartThings blog!
** Many thanks to the MAC Foundation for paying for the monitor at Max's new nurse charting station (shown in the above picture and the linked video).
Every birthday is a gift for a child with SMA. The second birthday, however, is uniquely significant.
When parents first hear the news of their child's SMA diagnosis, doctors often cite this devastatic statistic: "Most children with SMA type 1 don't live past the age of two. " Thanks to breakthroughs in treatment for newborns with SMA, this tide is beginning to turn. Nevertheless, no SMA family takes a 2nd birthday for granted.
For Max's second birthday (on August 1), we have the opportunity to give him two amazing gifts:
Max's condition prevents him from sitting up independently, much less moving from place to place. A power wheelchair will can change that by supporting Max in comfortable positions while enabling him to choose where he wants to go, steering by means of an adaptive joystick or switch.
SMA has also had a profoundly disabling effect on Max's ability to speak, as muscle weakness in his jaw prevents him from being able to close his lips to form consonant sounds. In spite of this, Max is highly expressive, and his speech therapists tell us that he is extremely bright. Each day he chatters away, and while it is easy to understand him when he is repeating words, phrases and sentences back to you, his attempts to speak longer phrases or sentences lead quickly to elaborate yes/no guessing games. An eyegaze device will allow Max to speak his mind, thoughts, and wishes in his own voice to his friends, family, teachers, and caregivers.
While the expense for these two devices is considerable, for Max they are probably the two most important devices for empowerment and maturity for the rest of his life. For individuals with Max's diagnosis who live into their teens and 20s, power wheelchairs and alternative assistive communication (AAC) devices become the primary means through which they interact with the world.
Will you join with us in celebrating Max's two years of life by contributing $2, $22, or $222 to help us buy Max a power wheelchair and eyegaze device?
For details and to donate, click here:
Here is a video showing how a Permobil power wheelchair gives one of Max's friends, Nora, the gift of independent mobility: https://youtu.be/in-JqkiVPXo
To see Max using a (loaner) eyegaze device: https://youtu.be/GM-utcIsE7k
Last year we shared how Max's cousin Joel was raising awareness and support for families affected by spinal muscular atrophy (SMA). This year, with the help of his mom (Max's great aunt), Joel got his entire school in on the act!
Moved by Max's story, Columbia Academy's eighth grade class selected SMA support and awareness as their year-long legacy project. Activities included:
We put together this video to thank Columbia Academy for all their efforts this year to help people with SMA.
Spring is here, and with it, the opportunity for Max to go out and about. We're very excited and are working hard towards getting two things: a wheelchair-accessible van and a wheelchair-friendly path from the back patio of our house (where Max's ramp is) to the driveway. We are in the midst of finalizing plans for both and could use a little help from our friends.
Installing a wheelchair-friendly path from our back patio down to our driveway will totally transform our ability to take Max on walks and trips. Just imagine replacing a 1-3 hour coordinated dance (to load equipment, accessories, machines, and Max himself into the car) with the beautiful simplicity of loading everything onto Max's wheelchair and rolling him straight out and onto a wheelchair-accessible van. It will make a world of difference (especially as we begin to take "baby steps" towards Max becoming independently mobile by means of a power wheelchair).
We're excited about broadening Max's horizons by taking him to parks, to the zoo, to visit friends and family, and more! For more details on our fundraiser, click here: http://www.youcaring.com/medical-fundraiser/help-max-go-mobile-/336447
Thanks so much for all your love and support!
"High-tech hope: Inventions bring the gift of movement" perfectly captures what the WREX robotic exoskeleton arms have brought Max and our family -- not just the gratifying experience of seeing Max empowered to explore the world in ways which others take for granted...but hope for a future of growth and life, of "independence and freedom."
Our thanks to Mike James, Traci Watson, Jack Gruber, and the whole USA Today team for telling this story; to Tony and JAECO Orthopedics for their amazing support; to Tariq Rahman and Whitney Sample for creating this amazing invention; to Andrea Santman, Dov Judd, and Zachary Lasko from Motion Education for traveling to Wilmington to get trained on the WREX; and to the many friends and family members who helped us give Max this incredible gift.
Cure SMA (formerly Families of SMA) has a new website, and Max is on the front page! Check it out at www.curesma.org! (Photo credit: Courtney Martineau)
When fifth-grader Joel James learned that his new baby cousin Max had been diagnosed with a serious genetic disease called spinal muscular atrophy, he told his parents he was going to keep giving Max lots of love. When they told him that SMA would not affect Max's cognitive development, Joel started brainstorming ways to help Max learn. "There is a lot of good technology and smart people in the world who would come up with a way to help Max as he gets older," he predicted.
Earlier this summer, Joel announced to his family members that he wanted to hold a yard sale and give all the profits toward helping Max in his fight against SMA. Yesterday the big day finally arrived. Friends, neighbors, and co-workers...so many people came out to purchase gently used toys for a good cause.
With everyone's help, Joel was able to raise over $300! We call that showing Max Strength! Way to go, Joel! We are so very proud...and Max is so very grateful.
Helping Max beat SMA since 2013 by raising awareness and support for research and families.