ALS is a progressive disease where muscle tissue in the body slowly dies and results in increasing paralysis over time. Seth is currently 3/4 paraplegic and unable to walk or stand on his own. Ultimately, ALS patients lose the ability to swallow, breathe and move. The person's mind, however, typically remains unaffected so he or she is aware of everything that is happening to them. ALS is always fatal and patients usually live for 3 to 5 years after diagnosis. There is currently no cure for ALS.
I am Seth’s full-time caregiver and was trained to administer medication and provide for all his medical needs at home. I am also trying to hold everything together taking care of our sons, Dylan and Hunter, who are three and four years old, as well as our fur babies. We have struggled greatly with insurance and extreme wait times in getting basic necessities for Seth, such as an electric wheelchair, which took several months to be approved, despite his desperate need for it in order for him to get around the house.
We are in great need of any financial help and support you can give. We are currently severely struggling to make ends meet, as I have had to stop working in order to take care of Seth and oversee his appointments, insurance, and all basic needs.
With our goal of $30,000, we would be able to support our household and get services and accommodations my husband needs, as follows:
-wheelchair-accessible van. He has been homebound for one year and not even able to make it to his son’s prekindergarten graduation because we do not have a wheelchair accessible vehicle.
-American Disability Act balcony door-. Seth has not been able to go sit outside on our home’s balcony because the doors are not fit for a wheelchair.
- Wheelchair accessible bathroom remodels with rolling shower and bars-. The bathroom and shower currently do not fit Seth’s wheelchair or Hoyer lift.
- Monthly expenses: medications proven to be helpful for ALS but not yet approved by the FDA, and household needs (foods, bills, or emergencies)
Looking ahead to the next few years, we also do not currently have the funds for a proper burial and honoring of Seth’s life, which breaks my heart to think about not being able to honor the love of my life. Any extra funds after the above expenses will go towards that.
We would be honored by any amount you could give, large or small.
Thank you for your kindness, your good thoughts, and for sharing our story.
- Danielle Brocco
- marlene g kaplan
- Susan Steinberg
- Robyn Budenstein
- Debbie Grigg
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