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Crowd turns out for fundraiser held by local boy stricken with rare extreme-pain disorder

Checking donors in at the Cut-A-Thon for RSD Dec. 7 in Warrensburg are (left to right): John Riley, Dylan Nicholson and Timothy Lucid, who is a North Warren student stricken with Reflex Sympathetic Disorder, an autoimmune condition that causes episodes of extreme, nearly unbearable pain.

Checking donors in at the Cut-A-Thon for RSD Dec. 7 in Warrensburg are (left to right): John Riley, Dylan Nicholson and Timothy Lucid, who is a North Warren student stricken with Reflex Sympathetic Disorder, an autoimmune condition that causes episodes of extreme, nearly unbearable pain. Photo by Thom Randall.

— A 13-year-old boy from northern Warren County has been stricken with a rare chronic disease that causes episodes of horrible, nearly unbearable pain — and dozens of people from the region jammed Heidi’s Clip Joint Dec. 7 to get their hair cut and support a fundraiser that the boy and his mother organized.

Although the family of Timothy Lucid of Adirondack is facing considerable medical bills due to the condition, Timothy and his mother Kerry Lucid are donating the money to research toward a cure. All proceeds are going to research Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome, both neuropathic autoimmune disorders.

The response of people reading about his condition in the Adirondack Journal was so great that the salon had standing-room-only for hours on Saturday.

Present at the event was Timothy Lucid, a top-performing 8th-grade student at North Warren Central, greeting people as they came in the salon, thanking for their participation in the fundraiser. He was backed up by schoolmate John Riley, who helps Timothy get around at North Warren, and Dylan Nicholson of Lake George, another friend who played on Timothy’s Little League baseball team several years ago.

“There are a ton of people, and this is a really good turnout,” Timothy said as he checked in people at the door. “It’s so nice to see the community rally around this cause and help out so generously.”

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Kerry Lucid trims the hair of Shannon Maille during the Cut-A-Thon for RSD, an event she and her son Timothy planned to help raise awareness about an extreme-pain syndrome — and to help others cope with the chronic disease.

Haircuts were $10 each, but many people donated far beyond that amount. Drawings were held for gift baskets containing various items, services, and gift certificates donated by various area businesses. All proceeds go to RSDS.org and RSDHOPE.org, a non-profit organization that assists families in getting the support they need to cope with this life-altering disorder.

Timothy was recently diagnosed with RSD after surgery for a fractured elbow. Timothy was an All-Star pitcher with an impressive fastball before being stricken with this devastating condition, for which there is apparently no cure known at this point.

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KevinG 11 months, 2 weeks ago

I wish young Timothy the best and hope he recovers quickly. As a long-term victim of this condition I can speak to the horrific nature of the pain associated with it. I was a Doctor of Chiropractic when a concussion from car accident induced the condition and ended my career. Over the last 15 years, I have learned a great deal about the disease and sadly, I must admit that this was information that I did not acquire in school ... unfortunately, this is also the case for many medical schools. The condition is not as rare as it may first seem, but a large number of victims go into spontaneous remission, often before a diagnosis is made and a second population will see remission after 6-24 months of intensive physical therapy and the use of a very wide range of drug therapies. While it is true that at present there is no cure, there is a great deal of work being done on many promising medications.

To Timothy and his parents, I would like to say, "Do not give up hope!". The story didn't say how long Tim has suffered with this condition, but by now, through information provided on the RSDS website, you should be aware that there is still hope for a spontaneous, or therapy assisted remission, especially if his injury was within the last 12-24 months, as mentioned above. If it has been longer though, know that those times are not written in stone; there are many remissions that take place even years after CRPS rears its ugly head, but that range is when the greatest number of remissions are seen.

Tim, you have a great deal of work and, unfortunately, pain in front of you ... but, you are young and an athlete and those are both in your favor (athletes know about hard work and pain!). To Mrs. Lucid I can only say stay strong for him and be his advocate, make sure the doctors and therapists are pushing him hard and doing all the research they need to do to get him the very best forms of therapy ... there is, as I said, much to hope for. I would also recommend looking into the many groups that help support and supply information for those with the disease and those who support them.

I'm sorry when I hear of any youngster struck with CRPS, but this story presents a nearly ideal situation if it has to happen ... a family, friends, and community all working to support a good, hard working kid who has a terrible, painful disease, one which, unfortunately, is all too often misdiagnosed, undiagnosed, or disbelieved ... I applaud the paper for telling his story, and all of Tim's supporters for their efforts and caring. Best of luck Tim.

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