Give Gina a Leg Up

For: Gina Salvatoriello
Organizer: Mel Meadows
Give Gina a Leg Up (Gina Salvatoriello)
of $10,000 goal
30% Complete
Raised by 53 donors

The Story

Artist, Philanthropist, Activist and New Mother. She also has RSD (Type 2 CRPS), a rare disease that is literally burning her alive and underwent the amputation of her leg on May 9, 2013, while her baby was just 3 months old.

Meet Gina.
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, most notably for being President for the Lansing Association for Human Right (LAHR) located in Michigan the outreach center for the LGBTQ Community and creating and running the 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 the LGBTQ Community and ocean conservation and most importantly 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. 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 the CRPS 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 CRPS 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/CRPS's trademark is an extreme burning pain. People who suffer from RSD/CRPS literally feel as if their body is on fire. There are four stages of RSD/CRPS, -- 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.

Meet Hope.
Stage 4 RSD/CRPS is difficult to treat because so few people even make it there. Less than 1% of those diagnosed with RSD/CRPS progress to stage 4. While there is no cure, 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/CRPS 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 her advanced condition, 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.

Fundraiser Updates

Posted on April 9, 2015

Posted on April 9, 2015

We are thrilled to finally announce that we are in the home stretch of being able to obtain enough funds to get the wheelchair and vehicle modifications that Gina has been waiting for since the amputation of her leg! We anticipate that by the end of summer, fingers crossed, Gina will be able to drive again.
Unfortunately, Gina also recently suffered a major set back in her medical journey. In the wee hours of the night on March 19, 2015 Gina took fell while attempting to transfer from her wheelchair and get back into bed. As a result of the fall her RSD/CRPS exacerbated and caused her left leg to begin to display the early symptoms of what occurred in her right foot and leg, she immediately lost good circulation from her toes to hip and while her leg felt ice cold to the touch it was a blistering bright red and began to tremor violently. For almost an hour Gina remained calm and attempted to get back into bed until it became abundantly clear that would not be possible. Her left foot begin to contract at the ankle, exactly like her right foot used to do prior to its amputation, and then I decided that it was imperative that we call 911.
Paramedics arrived and began to transport Gina to Florida Hospital South where she usually receives treatment but during transport she went into shock and developed a significant cardiac issue (tachycardia) that required her to be immediately rerouted to our local trauma hospital Orlando Regional Medical Center. She was treated in the emergency room for approximately 14 hours and the ankle contracture improved and was discharged and went home. Less than half an hour after arriving home she received an emergency call from the hospital informing her that she must return immediately for further treatment to prevent catastrophic injury to her left ankle and foot. Obviously disappointed, Gina returned to the hospital and her collective staff of physicians struggled to find the right combination of treatments to keep her left foot's severe muscle spasm and contraction from breaking bones or tearing the tendons and ligaments throughout the left ankle.
During her stay in the hospital her condition became so severe that she went back into shock twice, causing additional cardiac complications, and the hospitals special response team was called to the floor to assist the usual staff to prevent Gina from going into cardiac arrest. We consider ourselves very blessed that Gina pulled through as she always has, to the amazement of the physicians, and was finally stable enough to be discharged nine days later!
We count ourselves lucky that the staff of ORMC was diligent in her care, but it is now apparent that her left leg and foot are beginning to have the same issues as her right foot did in it's early stages of RSD/CRPS and at some point in the future will likely result in the amputation of her left leg as well. This came as a shocking blow considering all of the progress that Gina has so heroically made in the face of tremendous adversity since the amputation of her right leg two years ago. She continues to put on a brave face and is ready to tackle whatever complications may arise in the future and do so with grace and humor that is admirable to all those in her presence.

Posted on November 12, 2014

Posted on November 12, 2014

While I have met many challenges along my journey towards getting my new wheelchair I have faith that soon I will be able to purchase my required chair and be able to get around independently!

I thought that I would simply need to fill out paperwork in March which is my anniversary date of having my previous chair for five years. I was saddened to learn that due to changes with Medicare it is now considerably more difficult to obtain durable medical equipment; such as a powered wheelchair that I require.

I feel confident that I will find the way to get this new wheelchair! It is so much more than just the chair to me it represents being able to hold my little girl in my lap, freedom to take her out for walks and to play without having another adult to supervise and to be able to get around without the fear of my wheelchair malfunctioning or its battery dying prematurely and leaving me stranded. This chair represents my freedom. This chair represents my ability to take care of my family. This chair represents my Independence and ability to carry-on with work, donating time to charities and giving back to my community who has blessed me so much.

I want to thank everyone who has donated and continues to support me in my cause. I am especially grateful for everyone who has shared my story including the Orlando Watermark doing an article!

Posted on September 22, 2013

Posted on September 22, 2013

Yet another unexpected complication - after Gina was treated for the infection of her amputated leg she devoloped another infection called C-Diff, which is highly contagious. She has been hospitalized three times and the doctors are still working hard at trying to get it cleared up and Gigi infection free and no longer contagious.  Until then, Gigi is forced to stay at home and try to get better.

We are keeping her in our prayers and still working on trying to raise enough funds to get her a new wheelchair!

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