Dear to my heart

Today the ALS Association Florida Chapter has listed the raffle quilt information and photos on their website. It is a project dear to my heart. I mentioned on a previous post about Good Samaritans that Trish Bowman of Jersey Girl Quilts pieced and quilted the queen size quilt. We shopped together for the Hoffman batiks and chose colors that seemed to reflect hope and joy and a bright future, not to mention a bit tropical. But she used an Eleanor Burns pattern of double tulips and you'll note my favorite four patch pattern is included in the design. Trish Bowman of Orlando and a member of the Cabin Fevers Quilters Guild did an excellent job.

Well, I hope you will all find it in your hearts and wallets to purchase tickets for this quilt. If not for you, perhaps as a gift for someone you love. You see, the someone I love -- my husband -- Derrol. He has a slow-progressing, inherited form of Amyotrophic Lateral Sclerosis or ALS. His is a rare form of a rather rare disease. But those of us intimately involved with the disease see numbers rising.

The disease is not usually inherited. It hits sporadically. No one is safe from it. It hits athletes (also known as Lou Gehrig's Disease), couch potatoes, men, women, children. Derrol's brother developed the neuromuscular disease at the age of ten and wasted away until he died at the age of 18. There is no treatment. There is no cure. They don't even have an understanding of what causes it.

But they certainly see what it does. Most people see their hands and feet begin to lose muscle. Then it works its way up from the extremities and when the breathing is compromised, the end is near. And the end for most people comes within 2 to 6 years of diagnosis. It wastes away the voluntary muscles. They lose their grip, their voice, and their smiles. But the person you know remains inside of that body, knowing what is happening to them and unable to stop it. It is devastating for those with the disease and those who love them.

We had an incident this weekend (read my other blog, Observations) where Derrol had to be hospitalized. All we can do is maintain his quality of life. But healthcare providers don't understand how fragile that is and we had a battle to maintain what muscle strength and freedom he has. It is so rare that most personnel are not trained to care for him. They don't understand that whatever muscle strength he loses, he will not regain.

But the good news for us is that his progresses slowly and he has bounced back from the hospital stay and I watched him drive to work this morning after a week of recuperation. He must use a wheelchair because his legs that once were so strong no football linebacker could move him have now wasted to the point he can't do more than take a couple of steps. But with the wheelchair and van, he's free again to live his life.

The ALS Association helps us hook up with medical suppliers. They gave us the name of who to contact for his wheelchair. And he told us about vocational rehab who helped with the van and remodeling the bathroom so he could continue working. And we just paid to have the carpet replaced in our house with tile so that he could move about the house. And we have purchased breathing devices and well you get the idea. Being disabled costs a lot. A LOT! But none of the raffle monies go to Derrol or me. They all will support the programs for the ALS Association.

The wheelchair costs as much as a new car. More in some cases. A walker cost him $350. And yet the ALS Association maintains a closet of donated items that they hand out without charge. They maintain support groups that totally saved our lives and sanity. And they are advocates for us. If I had been unable to get Derrol the care he needed in the hospital or if they were harming him, someone would have come to help me explain and stand up for his rights. They go to Washington DC and fight for a national registry and medicare rules that move the process faster since most ALS victims have no time for red tape.

All of this to say -- please participate in this raffle and help support the ALS association. The money raised will also help fund research -- and that's where my hope lies. We must find a cause, let alone a treatment and a cure.

I know that quilters and fabric artists have the biggest hearts. I hope you don't mind that I ask you for a personal favor. Ask you to please get involved to save my sons. For you see, they have a 50-50 chance of developing this same disease. But then again, don't just do it for my family, but for your own. Five thousand people are struck with this disease every year in the United States and there is NO WHERE in the world it is not found. Military personnel have more than 50 percent higher rate of contracting ALS -- no matter where they served. So all of our families are at risk. It is a mean vicious disease that always ends is a terrible death.

Please let us use a quilt -- a symbol of comfort. A symbol of hope, of family. A symbol of subversive stitchers armed with needles fighting for something better. I pray you'll help me with this project. Spread the word on your blogs. And please buy tickets. The ALS Association is small and administration costs are minimal so the money goes 100 percent from this project to fund patient needs and research.

Thank you. Thank you. Thank you.

Dawn Goldsmith

T-shirt memorial

This past Saturday my husband and I participated in a Walk to Defeat ALS at a local park here in Central Florida. The weather was perfect and more than 400 people came together to raise money and awareness for this horrid neuro-muscular disease that continues unabated. No treatment or cure. But it does have a nickname: Lou Gehrig's Disease.

A rainbow of t-shirts glowed in the Florida sun and shouted their message to anyone who looked. Most had a prominent photo of a loved one who had died from ALS or was dying. There is no recovery from this disease. Usually people die within six years of diagnosis.

I walked and pushed Derrol in his wheelchair around the track. He and I feel lucky. He is my poster-child for ALS and he is alive and kicking and fighting for a cure or at least a treatment. Heck, we'd settle for just understanding what causes the disease. So far his face does not reside on any t-shirts.

We saw much love expressed in the t-shirts worn that day by adults, children, even dogs. Messages such as Kevin's Warriors, Adele's Allies, Walter's Warriors, and the poignant "We Walk for Mike."

Most of the people walking on Saturday are gathering money to spend on research. Research that will not help their loved ones. Our situation is a bit different. Not only does Derrol have a rare disease. He has a rare form of it -- the inherited form: Familial Amyotrophic Lateral Sclerosis. That means that our children have a 50-50 chance of inheriting it. Derrol watched his brother stumble, wear braces and die all by the age of 18. More than a dozen other members of the extended family have died of ALS and many more wonder if they will be next. So when we walked around that track the steps were made for brothers, sisters, aunts, uncles, cousins, nieces and nephews as well as for our sons and grandchild.

I will never forget those t-shirts. The art on them tells a bittersweet story of someone loved, but also of someone taken before their time.

One of Kevin's Warriors was his son. He and I and a few others were discussing the research we had heard about -- stem cell studies, new medicines combined to stop the progression look promising. And then I saw the young man's face. He wanted to be positive and supportive and cheer on the researcher's, but the truth was obvious. No matter if the funds raised Saturday brought a cure next week -- Kevin's father would still have spent the last five years of his life struggling against a disease that robbed him of everything except his comprehension of what was happening to him. And then it took his life.

These walks are held in every state. If anyone wants to participate in such a fundraiser -- check the ALS Association website for a chapter near you. Design your own t-shirts. Let your art speak for those who have been silenced like Adele, Kevin, Walter, Derrol's brother Tommy.

Of course t-shirt art isn't confined to ALS -- this kind of art, sadly, reflects almost every disease on the planet. ALS is just the disease that is closest to my heart because it has attacked the man I love. I write about our relationship and hardship in Notre Dame Magazine: Faithfully Departing.

I have met such lovely, warm-hearted, talented fabric artists in the years that I have been writing about quilts and quilters. I've thought of trying to find a way to raise funds to fight this disease within the quilt world. But I'm not much at organizing things, only writing about them. If anyone has suggestions on how to start such a project, or anyone interested in being involved, please let me know. I wonder if there is room in the quilting community for one more worthwhile fundraising cause.