Margaux has Angelman syndrome and frequently has insomnia, so it is very important that she is prevented from wandering around the house at night while her parents are asleep.
TAD previously modified an Ikea cot for Margaux by adding a door at one end. This enabled Margaux to independently access the cot, thus preventing her parents from straining their backs lifting her in and out.
However, Margaux has outgrown this cot, and her mother, Estelle, wanted something that would fit her for quite a while, as well as withstanding the strenuous shaking she sometimes applies during her sleepless periods.
The answer was moving her to a single mattress, and building safety railings that are high enough so she can’t climb over them (and spaced according to the appropriate Australian standard). Volunteer Bill Phippen built a large, robust set or railings, with double gates at the front to allow easy access for Margaux and for changing the sheets.
Bill used large parliament hinges to keep the gates well away from the jamb and avoid creating a point where Margaux could pinch her fingers. “That’s the challenge of custom-made cots, the need to keep fingers, wrists and heads safe,” he said. The gates are secured by two large pad bolts located at the base of the cot out of Margaux’s reach.
Margaux Occupational Therapist Julianne had initially suggested putting the mattress on the floor, but Bill improved on this idea. He built a 200mm-high wooden box base which sits inside the railings with the mattress on top of it.
The top of the mattress is now 540mm from the floor, and the rails are 1500mm from the floor. The wooden box can be removed in the future, making the rails effectively 200mm higher – so Margaux can continue using the setup as she grows older and taller.
Before beginning work, Bill checked the dimensions of Margaux’s bedroom to see what space was available. The room is at the top of a narrow flight of stairs, so he designed the railings to be built in sections which would fit around the banisters and landing and into the room. He still needed a helper to carry the parts up to Margaux’s bedroom, and fortunately TAD stalwart Malcolm Lye was able to assist.
Estelle was delighted with the look of the bed, which is finished in fresh white enamel paint, but she was concerned that the gates might not be strong enough. She asked Bill to come back and fit a deadlocked bar across the top of the cot to hold the gates doubly firm. “The important result is that she is safe from danger and her parents can get some rest knowing that she is safe,” Bill said.
Estelle is very happy with the final result. “It is exactly what we had in mind and it looks fantastic,” she said.