Ultralight & Manual Wheelchair Case Studies

Looking for Room to Grow

Meet the Client

Addison, 8 1/2 years old

SMA /Werdnig-Hoffman disease

Major Goal:
A transportable, growable wheelchair for a growing girl.

Traditionally, children with spinal muscular atrophy (SMA) have been issued strollers with full recline capability as a mobility option — strollers such as the EaSyS or Kimba with full recline and full leg extension capability. These, however, do not have much growth potential for children past 7 years of age, after which these children have to use reclining manual wheelchairs as their only option.

In February 2014, Addison, age 8 ½, came into National Seating& Mobility’s Milwaukee office for an evaluation to replace her current EaSyS stroller. She met with Sean Auter and me to determine what could be done to grow her existing stroller base until a new wheelchair option could be decided upon. She was 55" in height and weighed 50 lbs. The parents had done a very creative job in extending the EaSyS support platform using PVC pipe tubing to accommodate Addison’s height. When Addison was in public, her nurse walked in front of her, as her head stuck out 23" longer than the stroller’s front casters. The nurse did this to prevent people from walking into Addison during outings.

Defining a Successful System

SMA: Room to GrowHer parents reported that they did not wish to pursue getting a reclining wheelchair, as the frame would be too tippy backwards, and the chair would be too long to fit into transport vans or attend school. Also, Addison would have no way to come up in space to see her surroundings, as her hip angle did not match that of a reclining wheelchair. In other words, she could not sit in an adult wheelchair and have only her backrest be brought upright.

Addison also required mounting places for her respiratory and suction equipment. There was no real place to attach a transit tie-down system onto a conventional reclining wheelchair. There was really no way to make enough space on an existing reclining wheelchair to accommodate her equipment.

At evaluation in February, Sean and I took body measurements and determined Addison needed a support system at least 57" in length that allowed her to lie down totally flat, but bend slightly at her hips and knees. This system had to be no more than 26" wide to fit onto the stairlift at school, which she attends daily. The system needed to have adult push handles that could angle-adjust for the heights of the different people pushing while Addison was lying completely flat. Imagine a hospital gurney, but with push handles that rose above it — like those you would see on a tilt-in-space wheelchair like the Ki Mobility Focus CR or Quickie IRIS.

SMA: Room to Grow

Jeff & Sean Auter

The new system also had to allow for growth in length and changeable positions of her hip and knees. Several years ago, Sean and I would have gone into our back warehouse where our fabrication shop is and modified a wheelchair frame ourselves to fit someone like Addison and the requirements she has. We would have done welding and custom fabrications to hand-make a system for Addison. But in today’s world, working with a manufacturer makes things serviceable and allows duplication in the future on a worldwide level. We drew up a couple of stick figures showing Addison from a top and a side view. We identified the angles that we needed to be adjustable and also gave the dimensions for this to be created. Most manufacturers told us that a conventional reclining wheelchair was the only option, but they did have limited customization, which came at great cost.

SMA: Room to GrowNew Configuration Possibilities

In came Tom Whelan and Ki Mobility. They were excited to work with me on this, and together, we felt their Ki Focus rotational chair would be an excellent possible platform for a totally new seating system.

Tom came up with the idea of using their angle-adjustable links at the front and back of the frame and hip/knee/foot with telescoping tubes to allow for lower-extremity growth. My idea was to take the Focus and turn it backward so when the unit is tilted, it actually raises the entire platform forward into a more upright position. This allows Addison to view her entire world as much as she can tolerate.

Push handles were placed on the front of the chair as well as the back, which allowed the chair to be pushed from either end. Both sets of handles also were designed with angle adjustability in mind. By doing so, we save on the overall length of the chair. When not pushing from the front, those handles are folded down. This saves on storage space, and also prevents Addison’s head and feet from accidental impact. This took care of the frame.

SMA: Room to GrowWhat we had to do next was address her lying-down position and supportive surfaces, but keep in mind relative space to put her respiratory equipment and other supplies. Tom suggested we work with the Pete Cionitti from Therafin Corp. Sean made templates out of cardboard from the measurements we took and had them sent to Therafin. Pete and the Therafin team were able to quote us foam cushions and storage platforms to attach to the frame of the chair. We had the custom Ki Focus shipped to Therafin for installation of the positioning components.

Ready for the Future

Once all of this work was completed, the unit arrived back at National Seating in Milwaukee. Sean had Addison come in and adjusted the center of gravity of the frame, allowing it to fit into the family’s van and maximize the stability of the unit.

SMA: Room to GrowWe then adjusted the seating system. There are two armrests that fold down with Therafin lateral pad hardware, allowing the chair to be 26" wide at most to fit onto the school lift. They fold back up to allow Addison a comfortable position for her arms. The hip angle is adjustable, which compensates for hip and knee flexion contractures. The system has lateral pads along her thighs to allow us to control position of her lower extremities; these are telescoping to allow for growth. Only a new mattress will be needed in the future to accommodate for growth, as the frame does extend and cover for growth.

As you can see, there is plenty of room under the platform where Addison lies to allow for her storage of equipment, and the area is easy to access as well. The chair easily fits in the family vehicle, as well as at home and school. She is totally protected, comfortable and can safely explore the world.

SMA: Room to GrowI have been working as an RTS for 40 years and typically had to make things like this myself. It is great to know that companies like Ki Mobility and Therafin are there to assist us as ATPs to provide our patients with these unique solutions in this challenging world, especially when it comes to getting things like this funded. Addison has been using this new system for the past six months with great success, not only for her but for her family and caregivers as well. Seeing the smiling faces of the family and smiling faces of children like Addison has kept me continually involved over the past 40 years.

This article originally appeared in the February 2015 issue of Mobility Management.

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