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To tell you the truth… I’m scared beyond anything!

I’ve never been comfortable asking for help of any kind. I’ve always tried to live a life that I rather give than receive. And now, my disease is forcing me to step out of my comfort zone in order to battle it!!! All I can think of, are my two little angels and how I’m not ready to give up! I will fight till the end! And that’s a promise!!!
I was diagnosed over 11 years ago with Diffuse Scleroderma and since then my symptoms have escalated to the point where I have exhausted every form of conventional treatment. Since being diagnosed, after being told I could never be a mom, I have experienced the greatest love in life and that’s the love of children. I was blessed with a son and daughter and my doctors believe that was the reason I didn’t progress so fast. After my daughter was born, 6 years ago, my scleroderma picked up the pace and many of my symptoms started showing up all at once. My form of scleroderma affects both my exterior skin and internal organs. The literal meaning of scleroderma is “hard skin” and that’s exactly what this disease is doing to my body. I have severe hardening, swelling and stiffness in my joints. It has impaired my ability to move my hands and perform daily tasks from house work, personal care, taking care of my children and enabling me to keep a job. Because of my Reynaud’s, which shuts down my arteries on hands and feet, I also get very painful, open ulcers on my fingers that usually take months to heal. The skin on my face, arms and torso have also hardened causing difficulty living daily life. Internally, it has affected my whole GI system and lungs. My esophagus, stomach and intestines are severely damaged due to the constant high amounts of acid in my stomach that travels up the esophagus eroding the walls inside and my vocal chords. Also, because of the acid in my esophagus, I constantly gag and can’t sleep lying down anymore. Trying to take a handful of pills which I must take on a daily basis to keep some functionality in my body, has become a job on it’s own! Because of all the inflammation in my esophagus I can barely swallow anymore. My scleroderma, has also caused me to develop pulmonary hypertension which is the tightening of the airways in my lungs. I have a hard time breathing and am constantly out of breath doing the smallest tasks.
This past September, after much despair, I decided to try a very promising bone marrow/stem cell mobilization treatment which was done at the South Florida Bone Marrow/Stem Cell Transplant Institute. After 6 weeks of stem cell therapy, I did notice some softening of the skin on my face, my voice is sounding more like a human and I have less acid in my stomach which I’m not gaging on all the time. But now, 2 and a half months after my treatment and having constant medical follow ups, my doctor has informed me that my immune panels are showing what he feared to begin with. I have too much bone marrow damage and my cancer markers are high. He attributes that to the 6 years of taking chemo therapy medication to help me with my symptoms. My doctor believes that the next step in my disease is to develop cancer based on what all my immune tests show. My body produces a very low amount of stem cells and in order to continue fighting my bone marrow damage, I need a second round of stem cell mobilization treatment to try to beat the odds of getting cancer in the near future.
My medical treatment, my continuous follow ups and extremely expensive immune tests are not covered by insurance and financially it has been an extreme burden on our family. We can no longer continue my medical care because we have exhausted every financial resource we had. In order for me to continue this battle against my disease… I need your help! Desperately!!! If you could please contribute anything, and even if you can’t… just by sharing this page with everyone you know, I will forever be grateful for all your generosity and caring!
With your help I will beat the odds!!!
THANK YOU, from the bottom of our hearts, with all the gratitude and affection we could possibly offer.
Catia Leo

 

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