Help Jessica Fight ALS - 2022

As you know, Jessica has ALS (Amyotrophic Lateral Sclerosis) or as it is more commonly known, Lou Gehrig’s disease. Jessica was diagnosed with ALS four years ago this coming April. She was 38 years old. Doctors told her that the average life expectancy for an ALS patient is 3 to 5 years. The good news is that she is still on a slow progression that is likely to beat the average. But frankly that’s the end of the good news.

The disease has already taken virtually all of Jess’ abilities to be self-sufficient. She has to be fed because she cannot feed herself. She has to be dressed because she cannot dress herself. Her speech is slurred and often hard to understand. She cannot hug Oriana. She cannot wash her own face or brush her own teeth. She can’t get herself a snack or even scratch her own nose.

In the meantime, Dan works full-time from home. When the PCA is not there he is helping Jess get ready for the day. And get Oriana off to school. And preparing meals. And feeding Jess. And doing laundry. And and and. It’s a lot of work, on top of Work.

We started this Go Fund Me effort primarily to hire a Personal Care Attendant (PCA) for Jess. The PCA provides daily personal care as well as physical therapy. This therapy will slow the atrophying of her muscles and provide pain management.

Hiring a PCA has been a learning experience. Like many jobs nowadays, it has been hard to get and retain good experienced PCAs. At first, Jess and Dan went through an agency. PCAs came and left regularly. Just when they found one that Jess liked and knew how her needs had to be handled, that person was gone.

Then they tried to find and hire someone on their own. Their last PCA was a direct hire, and things seem to be going pretty well. But before long, she left too. Like many jobs nowadays, PCAs and agencies know there is a shortage of workers, and use this to leverage their fees. It’s hard to find someone who will work for an affordable rate, and will stay. Jess and Dan continue to look for a replacement. Meanwhile Ann is doing her best to fill in. But it’s a tough job.

We started the Go Fund Me for Jess about a year ago. Our goal was $30,000, and we actually raised $21,235. The goal was to have this last for a year, with the likelihood that we would have to ask for help again in the future. While we got less than planned, some strong management and frugality on the part of Jess and Dan have stretched the lower number for almost the whole year.

We are asking for your financial help again. Your donation will help pay for Jess’ PCA, as well as other inevitable needs as this insidious disease progresses. Our goal this year will again be $30,000, which is representative of a full-time part-time PCA (6 hr./day, M-F). Last year we planned for 3 hours/day, so you can get a feel for how things have progressed. And again, because this disease can linger for a long time, we may need to come back and ask for donations again next year as needs and circumstances change.

Once again, Jessica has an anonymous donor who has offered to match the first $10,000 raised through this campaign, dollar for dollar. This is a great start. And do not worry if we exceed the goal. Any excess raised will go towards medical bills and any other modifications or special equipment, so ALL of your money will be used to help Jessica in her fight against this terrible disease. Thank you in advance for your consideration and help.