Team Fionah

Fionah is a 3 year little girl with several rare diseases. She has Klippel-Feil Syndrome, Sprengels Anomaly, Thoracic scoliosis, Thoracic Insufficiency, a repaired tethered cord, a vascular ring, single kidney and FTT. Fionah has had 13 surgeries including a repaired tethered cord, VEPTR surgeries, a G-tube (feeding tube) and ear tubes.On 9/11/12 Fionah had VEPTRs(Vertical Expandable Prosthetic Titanium Rib) placed for thoracic insufficiency. She has her rods expanded every 4.5 months. Fionah fought an awful MRSA infectin on her rods last that she had 3 surgeries for, 2 wound vacs, a picc line for 5 weeks and antibiotics for 8.5 months.
There are many expenses that come with a child who has a chronic illness such as high copays, gas, flights to Philadelphia from Nashville, hotel stay when the RMH is full, food at the hospital, parking fees and buying necessities that insurance doesn't cover.
She had commercial United Healthcare but they have terminated their contract with A.I. Dupont effective April 1st leaving us to pay out of network or start all over with physicians who may have never heard of Klippel-Feil Syndrome. We recenltly moved to TN for my husbands job in April but they just made cuts and he is no longer employed.
We went to the marketplace online and filled out an application for coverage. Our application was to be expeditied to Tenncare but after a month of phone calls I was told there was an error in communication and they could not resend the information to Tenncare. After many calls and broken promises they told me I had to start over! I have been told that I need to obtain Cobra in the meantime while this gets straightened out. They told me it could take until November, which is when Fionah has her next surgery! The problem is we obviously do not have $1200 per month to cover our family with Cobra and the plan we were on does not pay for Fionah's feeding tube supplies or formula at all! Fionah's brother needs his ear tube replaced and his adnoids removed. Her sister's medication OOP is almost $400 per month! All three children are in need of speech therapy. Fox 17 news is covering our struggle with the HCMP on 9/11/14. Thank you to Senator Green who is stepping up to help! Any donation is greatly appreciated!

You can follow Fionah's facbook page at
www.facebook.com/RaisingRhane


Thank you,
The Scimeca's
  • Londyn Stoffel 
    • $40 
    • 77 mos
  • Jesse Mead 
    • $25 
    • 78 mos
  • Londyn Stoffel 
    • $40 
    • 78 mos
  • Anonymous 
    • $500 
    • 78 mos
  • Lita Mead 
    • $20 
    • 78 mos
See all

Organizer

Shawna Scimeca 
Organizer
Wilmington, DE
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