Due to some behind-the-scenes changes at GoFundMe, they migrated this to a new page. This provides a great chance to update on Grace and the current projects that we need to put together for her.
Grace is two years old and was born with a physical disability called Spinal Muscular Atrophy Type One, a rare disease that, until recent medical advancements, is often fatal. Grace has received each of three available treatments designed to stop SMA's progression. While still medically fragile, she is getting stronger every week. Grace is playful and curious about the world around her, and we hope to make the world a better place for her.
Our primary goal now to make our home more accessible, especially as she grows comfortable with her power chair.
We have monitored homes for sale in the region and concluded that anywhere we could move would require significant modification, and so instead are planning to modify our current home. All donations will be used for tasks including:
- Upgrading the service level of our electrical box so we can wire more rooms to accommodate Grace’s equipment.
- Redoing the upstairs bathroom, probably in a different space, in order to have an accessible shower, sink, toilet, etc and enough floor space to be ADA-compliant.
- Building on to the back of the house in order to add 1-2 rooms on the main floor with open floor space in mind so Grace can use her power chair indoors.
- Finishing the basement and installing a through-floor lift for Grace and her chair. This will add an open space for her to use her chair indoors and accommodate a sensory play area as well as a family area.
- Adding an office to the basement to clear a larger bedroom for Grace.
- Modifying the full bathroom in the basement to ensure it is an accessible space.
The totality of this will likely require a renovation mortgage of some kind.
To date, we have contacted many organizations but have been unable to find any grants to assist with this. A charity that previously reached out to us during the summer to assist recently told us they had to deny our application due to COVID limiting their resources. Your help and sharing Grace’s story is appreciated, especially during these times.
- Emily Lohr
- Karen Kirol
- Brian Ruskin
- Lori Farabaugh
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