A little over three months ago I posted a “GoFundMe” for my sister, Suzie, who lost everything in a tragic condo fire. I never realized that the fire wasn’t going to be the worst thing that was going to happen to her.

As many of my family and friends already know, Suzie was recently diagnosed with late-stage ALS and was given about six months to live. We are completely heartbroken. She was admitted to the hospital in Panama City and was put on a feeding tube. Due to her complete loss of muscle control, she needs assistance getting out of bed and struggles to speak. Luckily she can use her hands and can write or text her needs/desires. This disease is taking a toll on her body physically, however, her mental capacity is still amazing- she’s sharp as a whip and her personality is still evident.

My father and I flew down to Florida to visit Suzie (in the hospital) and tried to make arrangements to get her into a facility for treatment so she could be comfortable during her last months. I spent hours upon hours talking to nurses, doctors, case managers, skilled nursing homes, insurance companies, Social Security, and many other people and organizations. Unfortunately, the healthcare and process in Florida are not what we’d hoped for. While we realize with a diagnosis of ALS there is no wait time for Social Security disability, Medicaid or Medicare… we didn’t get anywhere and were told several times by SS offices down there she’d have to “make an appointment and wait like everyone else”. Three different people told us she’d have to wait at least 5 months- time which she doesn’t have. Plus this is inaccurate information. No one would help us help my sister get proper care down in FL.

Suzie’s wish is to come back “home”’ to CT for her final months. Our goal is to get her into a facility up here that specializes in ALS so she can get the treatment she needs. We also realize she wants to see family and friends she may not have seen in many years.

Insurance does not cover medical transport (around $30,000) so I will be traveling with a nurse to bring her back myself. Positive thoughts and prayers will be greatly appreciated during this time.

Once we get Suzie to CT we can start the process of disability, and Medicare & Medicaid to help with the cost of care- the facility costs $2,500-3,200 PER day and insurance only covers 80%.

I didn’t want to post another “GoFundMe” especially after recently posting for her condo fire, but many people have encouraged me to do it again- this time to help defray the cost of transporting Suzie to CT and to help with medical costs not covered completely by insurance (until we can get her Medicare/Medicaid). As of now, everything is being paid for by my parents but it’s been challenging and taking a toll on them. If you are unable to donate financially- positive thoughts, love, and prayers would be greatly appreciated.

Once Suzie is back in CT I will post an update, especially for friends and family nearby who may want to visit.

Thank you for all of your support during this very difficult time for our family.