Referral received from Phoebe’s Occupational Therapist as follows:
“Phoebe requires full time mechanical ventilation to support her breathing. She has a significant scoliosis and her right upper limb has lost movement in the shoulder and elbow joint. She is able to use her right hand functionally. Her left upper limb is unaffected.
Phoebe is due to start Reception in September this year. She has found it very difficult to independently push her equipment (ventilator mainly) around. Therefore, an adult is always very close by, carrying the heavy ventilator plus other essential bits in a bag. We have been exploring different ways of enabling Phoebe, however, she has found all options tried too heavy to push herself. We have had an Oxygen trolley donated by Cerebra – designed to carry O2 and has space for a ventilator as well. It has also been further adapted by Remap to allow for more storage of equipment, however, Phoebe finds it too heavy/cumbersome to push herself.
Cambridge Remap volunteer (who is familiar with Phoebe’s case, see CB1957) passed information onto Mum regarding an adaptation made to a Marcy Walker https://schuchmann.co.uk/product/marcy/ also on Makeability: https://www.makeability.org.uk/project/18189/childs-walker-with-ventilator/
In discussion with Mum and Phoebe’s Physio, it was agreed that this adaptation to the Marcy walker was very likely to be successful in enabling Phoebe some independent movement away from her carer when she starts school, considering the outdoor base and how compact it is.”
A Marcy walker was ordered from Shuchmann, and in light of the COVID situation, the OT arranged for the walker to be delivered directly to the Remap engineer.
A. Original Marcy Walker as received from supplier:
The Marcy Walker was initially returned by the client’s parents to have brakes and steering locks fitted. Then Remap made and fitted an adaptor to hold the ventilator via its standard attachment fitting. The ventilator is mounted in front of the walker’s upper cross-bar and on top of its lower one, which results in a centre of gravity quite far forward relative to the wheels. Various options for modifying the geometry were considered, but after testing this simple arrangement, it was decided with the parents to use it unless and until any balance problems appear.
B. Vertical view of adapter for attaching ventilator
A further problem was that the client’s right hand and arm proved not strong enough to steer the walker using its two separate handles. Following an experiment by the parents, Remap made and fitted a robust cross-bar to the handles, so that she can slide her left hand part-way across to help the right hand; this had worked well on other devices. The cross-bar was made of robust plastic tube, fixed to the handles by removable copper clamps, and its ends were closed with champagne-type corks to protect children and furniture, and to prevent objects being pushed into the tube.
C. Walker with adapter and cross-bar
E. End detail for cross-bar
Phoebe was able to start school as planned, and be independently mobile, taking her ventilator with her on the walker (plus a few dolls for company!).