A Tyler business is donating 10 percent of its proceeds Valentine’s Day to benefit 5-year-old Casen Cameron, who is battling Late Infantile Batten Disease.
Casen is the son of Corey Cameron of Holly Lake, formerly of Sulphur Springs, and Chandra McCullough of Queen City, and brother of Colby Cameron of Sulphur Springs. He is also the grandson of Pamela and William Cameron and Richard and Tammy McCullough; and nephew of Matthew McCullough and Amy Nordin.
Late Infantile NCL (Jansky-Bielschowsky disease) typically begins between ages 2 and 4. Early signs are loss of muscle coordination (ataxia) and seizures. “Affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills,” the Batten Disease Support Research Association’s website www.bdsra.org states.
This form of the disease progresses rapidly and generally ends in death between ages 8 and 12. Eventually, children with Batten Disease/NCL become blind, bedridden and unable to communicate, and it is presently always fatal. Batten Disease is not contagious or, at this time, preventable,” according to the National Institute of Neurological Disorders and Strokes.
“As yet, no specific treatment is known that can halt or reverse the symptoms of Batten Disease/NCL. However, seizures can be reduced or controlled with anticonvulsant drugs, and other medical problems can be treated appropriately as they arise. At the same time, physical and occupational therapy may help patients retain function as long as possible,” NINDS states.
“Casen started having seizures just before his third birthday, which was Jan. 15, 2010. The doctors that we saw just assumed it was epilepsy, and he would possibly outgrow it. Casen was put on seizure medication. The seizures continue, so the doctors changed the medicine, hoping to find the right combination. They’ve gotten progressively worse, he’s no longer able to walk unaided and his speech has been reduced from three word sentences to one word. He is currently losing his eyesight,” his dad said in late 2011.
The disease has continued to progress to the point Casen is in a wheelchair and requires a feeding tube.
A fund was established at City National Bank in Hawkins as well as in Sulphur Springs, where Corey formerly lived and worked at Sulphur Springs Police Department, and where his sister Amy Nordin and her children, Samantha Weeks and Cheyenne and Taylor Thompson, live. Anyone wishing to make a contribution to help Casen’s parents with medical and related expenses may do so at the bank; just note the funds are going to the Casen Cameron Medical Fund. Funds will be used to help pay for medicine, any other medical expenses not covered by insurance and related costs.
Casen’s family has started their own awareness campaign so that others will know to ask about Batten’s Disease if the symptoms present themselves in someone they love. Also, more focus on the rare neurological disease could help lead to more research and hopefully one day a cure. The family is selling T-shirts and bracelets, and established a website dedicated to Casen’s Crusade (www.facebook.com/
pages/ Casens-Crusade/ 178924292169298).
Currently, they are offering a white T-shirt with Angel wings and the Casen’s Crusade logo for $25 up to size large and for $30 for size XXL and up, and bracelets for $5.
For T-shirts or bracelets, contact Pamela Cameron by e-mail at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or phone at 903-769-3771, or contact Corey Cameron on facebook via the Casen’s Crusade facebook page, wwwfacebook.com /pages/Casens-Crusade/178924292169298.
Salsarita’s Fresh Cantina, located at 3316 Troup Highway in Tyler, will also be supporting Casen’s Crusade Tuesday. Ten percent of all proceeds raised from people dining from 4 p.m. to 8 p.m. Feb. 14 at the cantina will benefit Casen’s Crusade. For more information about the Valentine’s Day benefit call 903-593-1100 or go online to www.salsaritas.com. For more information about Casen and his crusade, visit Casen’s Crusade on Facebook.
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