A medical issue has arisen and they are looking for community support. After a visit for the nursing services they explained that their son, Connor, 6, who has Duchenne Muscular Dystrophy and Autism, is growing up and becoming too heavy for them to carry up and down stairs.
Unfortunately, their home is two levels and his bedroom that he shares with his brothers is upstairs. The bathtub is also upstairs, which means that not only the nurses have to carry him, mom and dad have to carry him downstairs for meals and upstairs for bed. As he continues to grow this is becoming more difficult. While Connor still has some mobility going up and down stairs, mom, Kira, said, "We have been advised by Doctors to avoid stairs to prevent additional muscle damage so we have been carrying him. So our options are to spend about $10,000 on a stair lift system (and have to modify our front door) or get his bedroom to the main floor which is what we were planning to eventually do anyway since a wheelchair wouldn't be able to fit upstairs." Due to his growth spurt and medical devices he will eventually need, the time has become critical.
Although they have looked into grant funding to have this project completed, Kira said, "We have been shocked at the cost and the lack of grant funding for something like this. Before we can even request state funding for handicapped accessibility, we need the room he will be living in, built." They have friends that are willing to do the work, but the cost of the materials is an issue. If anyone in the community, or outside the community, is able and willing to discount concrete, wood, siding, roof, garage door, etc, they would appreciate your help. They have also been doing fundraisers, but as Kira said, "We desperately need the materials to start his bedroom now."
You can reach Kira at kmullaly@gmail.com - Monetary donations are also being accepted.
At the Common Man Breakfast that assists with MD are the Mullaly children. Keely, 3, Declan, 5, Liam, 8, and Connor, 6 with DMD. Connor is 6 and he has a smile that lights up the room along with many priceless facial expressions. What he loves most in the world is music and dancing despite his disabilities.
Story/Mary Ann Horaj
From the Windham Independent November 13, 2014
To donate via Go Fund Me: http://www.gofundme.com/drp2yw
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