From our sister blog That Lawyer Dude:
They say that a friend in need is a friend indeed. I am here to say thank you so very much to Uncivil Litigator for this post about my family and of course about the fund raiser for the Scleroderma Foundation's National Gala.
For those of you who do not know, almost 8 years ago my beautiful wife of now 20 years (yesterday!), MaryRose, was diagnosed with Scleroderma. We were told she had 24-30 more months to live. We were told how she would die a painful and agonizing death to a killer that knows no moral boundries.
I do not have to tell you how devastated we were. For many years MaryRose had been my mate, my friend, my lover and even for a time my secretary (it was my favorite time of practice, for those who think it can't work, I have never had a better secretary and our life outside the office was just as happy.)
After having our children, MaryRose returned to working. Within a few months, she came down with a mysterious stiffening of her right wrist and pain in her fingertips. We thought it might be old age (she was mid 30's). We were sadly wrong.
Scleroderma is an auto-immune disease. In layman's terms the body is rejecting something with-in it (we think it is fetal cells we are not sure.) The body's reaction is to over-produce collagen which is scar tissue. This scar tissue builds up subcutaneously ( below the surface of the skin) crushing the bloodflow in the capillaries to the extremities and causing great pain (think frostbite only it never goes away). At the same time it is also scarring the organs (heart, liver, kidney, and most often lungs.) This scaring makes these organs inelastic and when they cannot move to pump blood, urine, air, etc our patients die. Scleroderma effects mostly young mothers or women in their child bearing years (men do get it too, about 15% of our patients are men.) With Puberty begining earlier we are seeing far too many cases of 12-18 year olds being diagnosed with the disease.
There is no cure. Thanks to research funded at the start by the Scleroderma Foundation, our patients are out-living the old prognosis. Their quality of life is much better than it was, but I would not say that it is good. As MaryRose likes to remind me, it is better than the alternative.
Everybody with Scleroderma has a different reaction to it. In MaryRose's case, she can barely walk and her hands are so malformed she cannot really hold even a dinner plate. Her pain is so palpable it makes me want to cry.
She has no more cushioning in her feet, she seemingly walks right on bone and cartlidge. Her skin is so tight throughout her body she can not lift her hands above her head. When she tries, you can see the skin pull up from her knees. The steroids they have given her to keep the disease at rest, has caused her to get osteoporosis.
MaryRose refuses the pain killers they can prescribe, because they need to be so strong that they will effect her alertness and she refuses not to be there for our two sons. She would rather that they remember her for her bravery than for being spaced out. Is there any wonder why she is my hero??
A few years ago, I became involved with the Scleroderma Foundation. It is the only organization dedicated to educating supporting and researching this disease. In addition to setting up teaching seminars, patient support groups and sponsoring Doctor seminars, We are the worlds largest private sponsors of research on this dreadful deadly disease.
I am now on the Board of Directors and I am one of the co-chairs of the Development committee. My youngest son Frank is our "team's" walk coordinator. He has raised nearly Twenty Thousand ($20,000)Dollars in the three walk-a-thons we have done. My older boy, Salvatore, has helped me lobby in Washington and has co-chaired a Jazz concert to benefit the foundation that raised over Thirty Five Thousand(35,000) Dollars.
In September of 2001 the Scleroderma Foundation was planning a November Gala in NYC. It was to be held at the World Trade Center's Windows on the World. On September 11th our dreams of a our most successful fundraiser fell with all those beautiful souls who perished with the downing of the Trade Center. Our Foundation took a long time to recover.
Now we were hoping for a triumpant return to NYC on October 24, 2005. However with Katrina's devastation and the wariness over the economy, philanthropic dollars are really scarce. Hence I have turned to some of my blogging buddies for help. IF YOU Would like to help, please click here
and if you can go to the event or have something to donate to our auction or better yet want to sponsor the event, click here . If you would like, you can identify yourself as a friend of That Lawyer Dude.
As a final aside I want to give a big THANK YOU to all of the tireless and generous people who have already worked on or contributed to this worthwhile cause. I especially want to thank Paul Schaffer (Late Nite with David Letterman) who directs the CBS Orchestra and has agreed to host our event.
Thanks for taking the time to read this. Please forward it to a friend and ask that they do the same. Who knows what may happen.
As always you can reach me at at www.colleluorilaw.com and go to the comments page.