In her 35 years of life, Gina (friends call her Gigi) has considered herself blessed. She is a dedicated friend, known for her kindness and selfless acts of charity toward strangers. She is an activist and leader with several nonprofit organizations, including being the current Orlando Chapter Coordinator for Sea Shepred Conservation Society. While her disability and has created obstacles for Gigi to pursue her career in art she remains steadfast in finding new ways to use art as a way to educate people about our oceans and enjoying her newest role, that of a mother, to her beautiful baby girl born in January 2013.
Here's the deal: after being involved in a terrible accident in 2002, Gina suffered major injuries and soon after was diagnosed with the most severe form of Reflex Sympathetic Dystrophy (RSD), stage four in both legs. This condition is also known as Complex Regional Pain Syndrome (CRPS-Type 2) but let’s just call it RSD. That’s easier to say, isn’t it? Each year Gina has undergone numerous surgeries and treatments all over the country.
For the past 10 years, Gina has bravely lived with a debilitating condition. All this time, she has managed to maintain an incredibly positive outlook, sense of humor and continued to dedicate her life to helping others -- all the while privately facing tremendous adversity of her own. Now she needs you to sponsor her.
But here’s the sad truth. Over time RSD has caused irrevocable damage in her right leg. She’s undergone 20+ surgeries just on her foot and has 19 pieces of hardware fusing every joint just to keep her foot attached to her leg.
After undergoing 7 months of surgeries and treatment at The Cleveland Clinic in Ohio in 2011, her RSD was well managed. Unfortunately it exacerbated and now Gina had to have her right foot and lower leg amputated (May 9, 2013) while caring for her 10 week old baby.
What’s that, you haven't heard of it?
You're not alone. Essentially, it is a rare, progressive, incurable, neurological disease wherein the body's nervous system malfunctions. RSD’s trademark is an extreme burning pain. People who suffer from RSD literally feel as if their body is on fire. There are four stages of RSD, -- Stage four being both the worst and extremely rare. Gina battles the pain every day. Unfortunately there are plenty of other symptoms of stage 4 RSD such as: extreme sensitivity to touch, swelling, irreversible changes to skin and bone, muscle atrophy, skin sensitivity, tremors, reduced immune system response, severe contractions of the muscles and tendons that can cause the limb to twist until the bones break. The disease would be fascinating, if it weren't so debilitating.
Stage 4 RSD is difficult to treat because so few people even make it there. Less than 1% of those diagnosed with RSD progress to stage 4. While there is no cure for Stage 4 RSD, there is hope in the form of emerging and mainline treatments, including inpatient epidurals, Ketamine infusions, pain management and implants.
Gina’s doctors informed her that the RSD had damaged her bones so badly, that necrosis had set in, and that they had to amputate her leg immediately to prevent the spread of infection throughout her bloodstream which would be fatal. Gigi still suffers with the neurological condition in addition to the amputation and will need extensive, continued medical intervention for the rest of her life.
Ketamine offers a revolutionary treatment because it ‘resets’ the brain in a sense by manipulating something called the NMDA receptors, which in turn stops the burning symptoms and severe contractions of the legs and feet. While the treatments will not save her leg, they will save her quality of life so that she can be there for her daughter.
With these treatments, Gina should be able to resume a relatively normal life as a mother, activist and artist.
Good Thing She Has Insurance, Right?
Treatment options are expensive and ongoing. Gina's fighting to continue working hard to pay for them.
Due to the difficult and individualistic nature of treating RSD, many treatments are still labeled ‘experimental’ by insurance companies even well after they’re proved effective. Even treatments or equipment covered by her insurance plan still have co-pays in the hundreds of thousands of dollars.
Treatment also requires medication costs, repetitive doctor's visits, specialized medical equipment, travel expenses – all of which make the costs seem insurmountable and typically uncovered by insurance.
Gina and her family have spent tens of thousands of dollars for her treatment and surgeries. With her resources depleted, Gina is still facing at a lifetime of treatments and surgeries just to keep the disease under control and from spreading further.
So where will the donations go?
Below are some of the treatments and equipment that have been recently recommended for Gina by her doctors and a breakdown of their costs.
- Due to the 2014 insurance changes regarding obtaining medical equipment through Medicare, Gigi has been unable to obtain the prescribed wheelchair she so desperately needs! She can not wait and has taken some serious falls and gotten severely hurt because of not having the proper equipment. Her new wheelchair will cost $8,000! She desperately needs this chair immidiately!
- Modifications to my home to make it wheelchair accessible; including ramps, widening doors, shower chairs, modifying the kitchen to make all areas reachable from a wheelchair, etc will cost roughly $5,500.
- A multi-day session of Ketamine infusion treatments typically costs $10,00, with Repeated annual courses being required.
- In-patient multi-day epidurals may be covered by insurance, but still cost thousands of dollars in co-pays.
- Another treatment Gina is pursuing is deep brain stimulation, which is also is not covered by insurance as it is considered experimental. One course of the treatment will cost approximately $3,000.
Our funding goal was created to make pursuing these treatments and quality of life possible.
Every bit helps - seriously. Treatment and returning to a healthy, full life is possible. It is just expensive and ongoing. Please give what you can.