Double-Amputees, Olivia & Shawn, Urgent Medical Treatment Needs
For those of you that know me, you know that it's very hard for me to ask for help.
My family is in urgent need of financial assistance for several crucial medical treatments and wheelchairs for my daughter, Olivia, and myself. The funds that we are looking to raise will go toward:
Cleft palate surgery for Olivia (Cost won’t be completely determined until after surgery)
2 custom wheelchairs: $7500 - 8500 for Olivia’s and $450 for Shawn
Dental surgery for Shawn (done in stages, $5000 per tooth, 7 teeth)
I worked for over 15 years as a medical social worker. Despite my experience, I have been unsuccessful in getting any approval from insurance and private groups for our needs. Despite my husband’s insurance coverage, the insurance denials and out-of-pocket expenses exceed $30,000/year.
I am not asking for the total needed for all of our surgeries. That would be overwhelming. I’m hoping that what I’m requesting will be a great start.
Olivia and I were born with a very rare genetic syndrome. We were born with a cleft palate, and also requiring an amputation of both of our legs above the knees. Our financial situation has become more serious due to several major medical expenses. Olivia is now 17 years old. Her last wheelchair was purchased when she was 10 years old and she no longer fits into the wheelchair.
Olivia has outgrown her leg prostheses, which mean she is unable to wear them, and requires a wheelchair for all of her daily activities. Insurance has denied a new wheelchair for her for the last 3 years, with 4 weeks ago being the last denial. Insurance states that since she has prostheses, she doesn't need a wheelchair. The wheelchair that we are trying to purchase will fit her into her adulthood. The cost was stated as $7500 but hers will require some customization due to her specific needs. She is completely dependent on us for her personal care needs which is very difficult for a headstrong, independent teenager!
Lastly, Olivia needs a cleft palate surgery this winter to improve her speech. As a junior in high school, she is realizing that it’s difficult for people to understand her when she’s speaking and the careers that she is interested in, requiring speaking. The surgery will tighten the skin in the back of her throat which will improve her speech (and help with her confidence). If she is able to do the surgery this winter, then she has the added benefit of her school assisting her with speech therapy.See video below to see Olivia without her prosthesis or wheelchair. My health issues are extensive and while my daughter’s health is my priority, I can no longer put my own health on the back burner.
Approximately 9 years ago, I was no longer allowed to work. After being diagnosed with serious neurological issues, Valley Fever Syndrome, an unknown autoimmune disorder, undergoing 3 surgeries in the past 2 years and continual, serious bacterial infections in my leg and my face/gums, I have been bed ridden for the past 9 years and I am currently unable to walk at all due to my own significant health issues as an amputee.
I never dreamed that I wouldn’t be able to work, leave the house independently or walk. The dental surgery that I need will be complicated and costly. Surgery is needed immediately to treat my bacterial and fungal infections in my gums and cheek that contribute to my overall health.
The reason that I am asking for financial help this year is that it is critical. We can no longer put off buying a wheelchair for Olivia or managing my medical treatment as well.
We had unexpected medical expenses this year and are still attempting to repay medical bills from recent surgeries. We truly need some financial assistance. The amount I am requesting would help immensely. Thank you for your generosity and support. My family is incredibly grateful!
Shawn Krause Fernandes