Johanna's Hope

As many of you know who have been following Johanna's journey- Jo's had over 100 neurosurgical procedures- and six of them in the past 4 months.

Jo has a rare neurological disease-CCM3- which causes frequent hemorrhages, seizures, and hydrocephalus in her brain.  Over the past 23 years, we have gratefully cared for Johanna in our home- even selling a larger two-story house-downsizing and renovated a home that could be made more accessible for Johanna's needs. 

Shortly after we renovated the new house and moved in, Johanna suffered a series of neurological set-backs including shunt malfunctions, brain hemorrhages, and seizures that shifted her baseline. 

Last year she was placed on a ventilator after suffering an intractable grand mal seizure and had numerous surgeries and interventions.

While still recovering this year, Jo suffered a large hemorrhage near her brainstem which caused severe ataxia and further decline.

Since May, she’s had seven more surgeries and spent the summer in and out of the hospital and on IV treatment protocols for infections.

She can no longer ambulate-or transfer from sitting to standing- as steadily as she once could. She suffered further cognitive and motor decline and requires much more hands-on assistance for daily tasks. 

Jo uses a walker in the house and a wheelchair outside the home. Now, we are also realizing she sometimes needs a wheelchair to use in the house, so we are heading for an evaluation at a wheelchair clinic in the next few weeks.

To accommodate these changes and keep Jo safe, we need to make more renovations to our home. We hope to help her gain back a little more independence in our own home.

The bathroom is of particular concern as Jo and I have both fallen as I was helping her to shower and dress. We need to relocate a washer/dryer, open the existing laundry wall and expand the bathroom to make room for a roll-in shower, built-in benches and an accessible toilet and sink. 

Our home sits on a slab foundation so this makes it complicated to reach the water pipes under the floor and to reroute the electric. We may need to build a new closet in the garage for the washer and dryer.

We also need to level the driveway (we sit on a hill and the driveway is pitched at a slant) and build a cement ramp to the car. If possible, we’d like to build a level cement walkway to the backyard so Jo can get to "Jo's Cottage"- a shed on our property where she does and displays her artwork.

We are seeking every possible avenue to get assistance to do this project. We have an application into Medicaid to help us to renovate the bathroom. We've already waited a year for some response and we are positive they won't get involved in knocking down walls and moving appliances or leveling the driveway.

If you are able to donate, that's great. Also, if you are someone who can help with digging and leveling or paving a portion of the driveway, building a cement ramp or you are an electrician or plumber- please feel free to reach out. Any assistance is greatly appreciated.

Johanna inspires us every day. We are grateful for all your support and prayers.

Donations (90)

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  • Anonymous
    • $200 
    • 4 yrs
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Eileen Benthal
Riverhead, NY

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