My son Ismael 22 has DMD . He has scoliosis at an 80 degree cardiologist did not gave him clearance for spinal surgery due to heart too involved.. He has positioning issues and is unable to tolerate his regular hospital bed at home.He seems to sink in the middle of the bed causing his chest to cave in and his body to slide down making breathing difficult.He has a nice alternating air loss mattress but the problem is the design of this bed that when head board is up caused a sandwich effect on Ismael due to innability to move and his scoliosis and loss of muscle tone are not helping . We tried everything from pillows, bed foam wedges,gel overlay a power Lazy Boy recliner but he still unable to tolerate this surfaces.He had an only one time OT evaluation paid by Hospice since Medicaid do not cover OT once this boys become adults and along with a local wheelchair specialists they tried to build a customized positioning aid with costumized backrest and was a total failure. He is being sleeping in his Permobil power chair that with a little bit of creativity I transform in to a bed by placing a dining chair on each side of his wheelchair with a tower of pillows to support his arms and shoulders when tilt back.. I have tried to get help from local MDA,Hospice,CMS, with no success. I had to resigned in 2007 in an effort to provide my son with the best care possible at home not an institution.So with no private insurance anymore its being very difficult to obtain certain things like a special bed. I need suggestions or advice on what type of bed would be good for him if anyone has dealt with the same situation. We are also planning to start some type of fundraiser to help our son so I need suggestions on that too.

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