Help Molly medical expenses rare CSF leaks

Hello,

 

My name is Cameron Appelt, and my sister, my cousins, my mom’s close friend Dana, and I are setting up this GoFundMe for my mom Molly. For the past 15 years, my mom has been suffering from neurological issues as a result of multiple CSF (Cerebrospinal Fluid) leaks, which cause many symptoms, such as debilitating migraines, constant muscle and nerve pain, periods of double vision, difficulty speaking and focusing her eyes, nausea, seizures, muscle weakness, confusion, blackouts, balance issues and falls. However, she has only been properly diagnosed with this condition since 2018. As a result of her symptoms, my mom has been unable to live independently and requires 24/7 care. Unfortunately, our opportunities for support have been limited these past few years, so she has been living alone on and off since the year 2019. My cousins and I have attempted to fill the role of caregiver, but as young adults we are limited in our capacity to do so. Due to this limitation, we have decided to seek out the help of others through this GoFundMe. Our hope is that the money raised through this fundraiser will help my mom pay for in-home care, past and future medical expenses, and disability accommodations, such as a new wheelchair, ramp, and lift. 

 

For some who interact with this GoFundMe account, this struggle may come as a surprise. A large portion of my life has been spent caring for my mom, but I have mostly tried to keep that part of my life separate from my social and professional life. Unfortunately, my cousins and I are at a breaking point, and we are unable to continue to be the primary source of support for my mom. In the past 3 years, my cousins and I have taken my mom on 10 trips to Mayo Clinic in Rochester, Minnesota and 4 trips to Cedar-Sinai Hospital in Los Angeles, California. These trips were 10 days at the least and nearly a month at the most. These trips required my cousins and I to make many sacrifices over these past 4 years, such as missing out on job and internship opportunities, having to call off work, and having to skip and drop classes. My cousins have almost lost their jobs, and I am barely on track to graduate this year. These past four years we have often felt that we have had to make a choice between my mom’s health and our futures. However, when seeing the pain that my mom goes through, considering our futures become a difficult task. 

 

While it has been difficult to see my mom suffer as a result of her condition, it has been harder to see her suffer due to our inability to support her. Before her illness, my mom was an outgoing, independent, hardworking, and loving person, and she still is very much that person today. Unfortunately, her illness has crippled her ability to live a full, healthy life and has stripped her of her independence. However, we still have hope that she will be able to be healthy and independent again, and we will continue to support her to the best of our ability. 

If you would like to help us in our mission to provide a better, safer life for Molly, we would be incredibly grateful if you could donate to and share this GoFundMe account. If you would like to see what your donation will go towards, please look at the list of expenses that we have provided below.  Also, if you would like to learn more about Molly’s condition or our experience, please check the updates that my mom has attached to this web page. 

Thank you all for your support!

Home Health Care Cost:

Update approved for State Dors program waiting for contracts to be completed and to be contacted 30 more days or so. Will receive 5hrs care 5 days a week but do not take to appointments so will still need home instead. Have paid Care Giver provider $5400 so far. Will have another 2-4 weeks to pay them before State program starts covering the weekdays. So any help is much appreciated!!!!! 

•Home health aid weekends week $30p/hour weekend rate $240 p/week $920 p/month. And appointment days $150 per day 

 

Cost of handicap-assisted equipment:

•Electric wheelchair $3999- update Medicare will cover in January 

•Lift for van $800- update Medicare will cover in January 

•Ramp for garage stairs $500 Update IATP State program will install 3month project

•Recumbent Physical Therapy.  elliptical $3495 not covered 

•Bath chair lift $1087 not covered 

 

Travel costs for Mayo Clinic in Minnesota: 

September 2018 

October 2018

November 2018

December 2018

January 2019

March 2019 Csf venous fistula leak surgery 

June 2019 -referred to Dr Schievink Cedars-Sinai LA, California 

 

Travel costs for Cedars-Sinai in California: 

csf venous fistula leak surgery 

September 2019

December 2019 blood patch 

July 2020 csf leak surgery

 

St. John’s Springfield (surgery & IV antibiotic costs) 

Emergency surgery neck abscess, sepsis ICU stay & in home 1 month IV antibiotics.

 

Thank you for reading Molly's story. We appreciate all of your support!

 

 

Cameron, Megan, Jenni, Tyler, and Dana

 

 

 

Links for information on csf leaks. If someone you know has excruciating headaches and other neuro symptoms and not getting a diagnosis, look here: 

 

https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/csf-leak-symptoms/

 

https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/

 

https://www.csfleak.info/profiles/