Levi Spencer was born handicapped, but has never asked why, as he drives himself daily to do what everyone else does normally.
In 2012 Levi Spencer with born with Spina Bifida, which is a rare birth defect effecting only 0.0005% of new babies born. While the early tests showed that Spina Bifida was a possibility, the Spencer family was firm that they would bring Levi into the world and make him part of the family and community.
At only one day old, Levi went under intensive surgery to to close the opening on his back to encase the nerves from further damage. And just two days later he received a corrective shunt. This was a critical point for Levi, but luckily the operations have held.
Spina Bifida is something that Levi will need to live with for the rest of his life, as he is paralyzed from the waist down, and there is no cure.
Levi is now four years old, and the Spencer family, long standing residents of the Roxbury area have adjusted their lifestyle to ensure that everything meets the new requirement of taking care of Levi.
The problem they currently face is that their home of 12 years is not Levi friendly, as he is not able to access the bathroom, food or clothing areas, or even get a glass of milk on his own. This is the reason for raising the roof of the home, to add a second story, move most of the family upstairs, and open up the lower portion of the home for Levi.
To try to better understand, here is a typical day in the life of Levi and his family:
- Breakfast: Levi is carried out for breakfast as his day braces are not in place yet
- Getting Dressed: Levi currently needs to be fully dressed, as he is unable to reach any of the drawers
- Braces: Levi is then put into his braces, which takes up to 10 minutes. They lock at the waist and hips allowing him to use either a wheel chair or crutches.
- Off to School: Levi is then off to school at Preschool program at Kennedy Elementary
- Physical Therapy: The required PT takes place at school once a week
- Back Home: Levi now needs to undergo 90 minutes of bathroom duty (in the only bathroom of the house, since he doesn’t have control in this area.
- Play Time: Levi loves to play with the rest of the family, but due to the home layout can only go into a few rooms, due to the width of the doorway, or the size of the room
- Bath Time: Currently Levi gets bathed in a regular tub, which is difficult due to disabilities.
- Bed Time: Levi is then outfitted with a different set of braces designed to not allow his legs tighten up overview.
In the future Levi hopes to do most of these events on his own, by accessing things that are within is reach, or that are now accessable.
Raising the Roof for Levi:
The Spencer family is currently seeking your donations for the addition of a second story that would move the rest of the family to the upper level, while the Levi family will try to do most of the work on their own, they need your help in the following areas:
How to Help:
- Donation of building materials (Lumber, Drywall, etc.)
- Donation of labor/time to help with the construction
- Donation at the special Levi fund-me sites
- Attendance/Support at the different Levi “Raise the Roof” Events
- Support of Levi mother’s Photography business which goes to support this initiative
- Additional Business Events/Sponsorships are also most welcome
- For more information on Spina Bifida
Let’s help get this done for Levi, as he is determined to help himself