DBS for Tourette's-Trevor Smith

Update-Dec. 24th, 2018

Dear Friends,

On Friday, we found out that we are getting the best Christmas gift we could ever receive. After two very long years of fighting with three different medical insurance companies and then trying to fundraise after exhausting all our appeals, The Mayo Clinic has informed us that they are now going to cover the entire cost of Trevor’s brain surgery!

This is truly a Christmas miracle, a $200,000 Christmas miracle! We are so grateful to the Mayo Clinic and Trevor’s doctors for this incredible gift.
Please know that we are so grateful to everyone that donated their money, time, or talents, spread the word about our campaign, and prayed for Trevor and our family.

As we said in the beginning of our campaign, if it were to overfund, we would put that money in an account for Trevor to use for his continued medical care. With the Mayo now donating the surgery, we are ending this campaign and the money raised here will go towards that continued care.

With DBS, Trevor will need to have a minor surgery every 2-3 years to replace the batteries in the device. Because DBS isn’t FDA approved for Tourette Syndrome, we have heard that many insurance companies are also refusing to pay for these minor surgeries as well. We won’t know for sure if insurance will cover them for Trevor until we get there, but when he does need his first battery change, he’ll be about 21 years old and just graduating from college, and this fund will be an amazing help to him.

Please be sure to like Trevor’s Facebook page, https://www.facebook.com/DBSForTrevor/,  to receive future updates about his surgery and progress as well as announcements about Trevor’s song release dates and when and where you can watch Trevor on television and on YouTube. We have already done some filming and we are very excited for Trevor's story to be told to such a large audience, raising awareness about the need to get Deep Brain Stimulation FDA approved for severe, debilitating Tourette Syndrome!

Again, we thank you all and we hope that your holiday will be as wonderful as ours! 


Chris and Missy Smith





UPDATE-Nov. 14th, 2018- Trevor will be sharing his story and performing his song “Crazy” on Nov. 15th at the Tourette Association of America’s annual gala in NYC!

UPDATE-Nov. 1st, 2018- Through the generosity of Sweetwater Music in Fort Wayne, Indiana, Trevor was able to record two of his original songs! Keep checking back for our release date announcement and info on where you can download his songs (we estimate early December for this release).

UPDATE- Oct. 16th, 2018- Happy 18th birthday, Trevor! We filmed with Barcroft Productions yesterday for an episode of Born Different! Watch our updates for information about when and where you can watch his episode. 

 

Eighteen-year-old Trevor Smith has severe, debilitating Tourette Syndrome (TS). This condition causes his body to jerk, twist, and contort uncontrollably from the moment he wakes up, until the moment he falls asleep. After more than a decade of these constant physical tics, Trevor also lives with chronic pain in his neck, back, and many of his joints.

Trevor has tried all the available medications and other non-invasive therapies for Tourette Syndrome, including alternative treatments, but none of them have been able to stop his severe tics. Trevor now has just one final option left to find relief and normalcy, Deep Brain Stimulation (DBS).

With DBS, two electrodes are implanted deep within the brain, these electrodes provide electrical stimulation that can lessen or eliminate the tics, tremors, and other unwanted movements in conditions like Parkinson’s, Essential Tremor, and Tourette Syndrome.

Trevor was approved to receive Deep Brain Stimulation by the entire Board of Neurology and Neuromodulation at the Mayo Clinic in December of 2016, but we are now almost two years out from that approval and Trevor still has not had the procedure done. Trevor has been denied coverage for this procedure by three separate medical insurance companies after lengthy appeals.

Trevor has no legal recourse with these denials because DBS is not FDA approved specifically for Tourette Syndrome. FDA approval may never happen, but not because DBS doesn’t work. It is quite rare to have a case of Tourette Syndrome so severe that it warrants DBS surgery. The makers of the DBS device would never see a return on the millions and millions of dollars it would take to get that FDA approval.

As a middle-income family with now two kids in college, we are simply not able to afford a six-figure brain surgery procedure out-of-pocket. Also, as a middle-income family, we do not qualify to receive help paying for this surgery by any government program or charitable organization.

With every day that goes by, Trevor’s body is being damaged more and more. Our greatest concern is his neck and we pray that we can intervene before the damage becomes so severe that he will have to live with chronic pain for the rest of his life no matter what we do. We have created this GoFundMe campaign in hopes that we can help Trevor before it is too late.

We have set our fundraising goal at $125,000 which will at least cover the down payment the Mayo Clinic requires before they will do the surgery. The total cost of this surgery will be around $160,000-$200,000, assuming there are no complications.

Should our campaign overfund, that money will be used for Trevor's continued medical care. He will need a minor surgery every 2-3 years to replace the battery in the DBS device. These minor procedures may not be covered by insurance as well because DBS isn't FDA approved for Tourette Syndrome. 

Please know that we are so grateful for every single prayer, share, and donation.

 

A little more about Trevor…

Trevor Smith lives with his parents and two younger sisters, Olivia and Savannah, in Greene, Iowa. They have lived in eight different states since Trevor was born. Trevor was first diagnosed with Tourette Syndrome when he was 7 years old and living in Justin, Texas.

Trevor’s first neurologist was hopeful that his condition might improve when he hit puberty or shortly after, this is quite common for kids with Tourette Syndrome. Unfortunately, when Trevor hit that age, his condition began to worsen. It wasn’t long before Trevor was living in a perpetual cycle of constant, uncontrollable physical tics.

The social impact of Tourette Syndrome has been especially brutal for Trevor. Homeschooling was the only way to give him a safe and productive learning environment. When he was away from the bullies, and at home where he was free to utilize the learning methods that worked for him, Trevor then excelled in his studies and even went on to graduate high school at just 15 years old. Trevor is now in college, engineering is his major.

His educational goals are not the only place Trevor hasn’t allowed his condition to hold him back. Trevor is an incredible musician in-spite-of his severe Tourette Syndrome. Trevor plays the guitar, piano and drums, and he even writes his own music.

Through the generosity of Sweetwater Music in Fort Wayne, Indiana, Trevor was able to record two of his songs! We will be announcing the release date to download Trevor’s songs in the coming weeks. And of course, any money made from those downloads will go towards Trevor’s surgery.

People often comment on the effect music has on Trevor when they see him perform. Something truly magical happens when Trevor gets into a groove while playing a song. His tics will relax just enough to allow him to play with ease. These amazing moments give Trevor just a short glimpse of what life could be like after getting Deep Brain Stimulation surgery.