Home modifications for Audrina

Audrina was diagnosed at only 8 months old with Ollier's Disease and was given an additional diagnosis this year of Maffucci syndrome.  There are only roughly 200 cases of Maffucci recorded in the entire world. While Ollier’s typically involves lesions in only the long bones, Maffucci’s involves bones but is also accompanied by soft tissue hemangiomas and vascular malformations. This disease can involve only one part of the body, one side of the body, and more rarely the entire body. Unfortunately for Audrina, an MRI study confirmed that nearly every long bone in her arms, legs, hands, and feet were involved, as well as the flat bones in her hips, scapula, and also her spine and ribs. 

Audrina has already endured 7 surgeries and in the very near future is slated to have a leg lengthening procedure.  This disease involves us constantly trying to keep up with the growth and multiplication of these tumors in her bones and it appears that the only way we can do that is with more surgery.  

Audrina’s goals are simple: she wants to be like the rest of the kids. She wants to play and laugh and be able to do things on her own without needing help from anyone else. Her physical limitations restrict her ability to do that. As she gets older we cannot just pick her up and carry her like a baby. And as she has reminded us many times, “She is a big girl and doesn’t want to be carried like a baby.” It’s not good for her and it is not good for us either. As parents, we want to take her pain away and make it all better. Sadly we cannot do that and it becomes hard to sit and do nothing. Over the years we have made small gains in areas we can help with such as a ramp into the house and an electric wheelchair. These projects are expensive and certain handicap specific items are so costly that we grow frustrated knowing that it’s so costly just to be special…as if being special isn’t hard enough.






Our house is not at all accessible for wheelchairs- electric ones or even tiny ones like hers. We have a small house that you could call a “fixer-upper." Our goal is to turn this small house into a home that Audrina can get around in and grow up in as independently as possible. Some of these modifications would open up the living room so she could maneuver her chair around the rest of the house more easily too.

The project proposed by an architect specializing in handicap modifications includes major renovations to the home by combining the two first floor bedrooms and existing bathroom into a custom accessible bedroom/ bathroom suite for Audrina. This will include an accessible roll in shower, roll-up sink vanity, accessible toilet, custom storage and an overhead patient lift system to assist in her movements with help by family members.  Additionally, new lighting, two way communications, door widening, grab bars, and wall handrails round out the features for this renovation. 

By displacing our other daughter's bedroom and the family bathroom, the project includes a proposed second floor addition to create new bedrooms and bathroom removed by the first floor renovations for Audrina. Once we can accomplish these things, Audrina will finally have a shot at being able to explore her world independently. Without an accessible home we fear she will never be able to do this.