VERSAILLES — The definition of big brother according to Wiktionary is “a sibling’s older brother used especially by children or by parents in speaking to their childre, and the name of a David Bowie song written in 1973 for a never-produced musical of George Orwell’s, ‘Nineteen Eighty-four.’”
In Versailles, big brother, nine-year-old Josh Myers is hoping to create awareness and lift the spirits of his younger brother, Aiden, who is headed to Texas in June to see Dr. Howard Weiner, a pediatric neurosurgeon, for help with his tuberous sclerosis complex (TSC). TSC is a rare genetic disease that causes noncancerous (benign) tumors to grow in many parts of the body.
The boys are sons of Danielle and Doug Myers.
Josh, who attends Versailles Elementary School, says his favorite classes are gym and math. He would like people to learn more about TSC at www.tsalliance.org and to send cards to Aiden at P.O. Box 4546, Sidney, Ohio, 45365-4546.
“We are so happy every time we see cards in the PO box to brighten Aiden’s day,” said his mother, Danielle, in an email recently. “The mail has slowed as Josh has been concentrating on end-of-the-year school work, but he is always trying to think of an idea to get his brother more cards. Josh loves to sit and read the cards to Aiden. Aiden also loves to go through the cards himself and show me what is on them. This project has put a smile on all of our faces and we definitely feel the love and support of the community as we start this difficult process.”
The family has set up a Facebook page called Cards for Super Aiden, which contains encouragement and pictures of Aiden and his siblings. Aiden, who attends special classes at Bradford Schools, is himself a big brother to sisters Katelynn and Elise. There is also a GoFundMe page called Super Aiden’s Biggest Battle (listed at Ansonia, Ohio).
Weiner is moving his practice from New York to Texas Children’s Hospital in Houston, and when he is settled, says Aiden will be his first case.
At 4 months of age, Aiden was diagnosed with infantile spasms (IS). These seizures are considered catastrophic, as they occur in clusters and are very hard to control. Children who have IS don’t have a good prognosis unless the spasms are controlled, because developmental progress can slow or regress when the brain is too bombarded with seizures to make any new developmental ground.
When Aiden was 3, Danielle and Doug transferred his care from Dayton Children’s Hospital to a TSC clinic in Cincinnati headed by Dr. David Frantz. Frantz refers three to four patients a year to Weiner, who is touted as one of the best neurosurgeons. There is a YouTube video of Weiner explaining the surgery for TSC on an episode of “The Doctors.”
“Tuberous Sclerosis is not as rare as one may think,” Danielle said. The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide. Numerous clinics have sprung up in the last few years.
Aiden has more than 35 tumors in his brain, one on the back of each eye and involvement in one kidney (that has not caused any problems). He previously had some in his heart that have since dissipated, which is typical as a child grows.
The Myerses were presented with the option of neurosurgery in 2012 along with an option to try a chemo medication which has been increasingly used to treat patients with TSC with positive results. They opted for the drug which worked well, and Aiden was seizure free for close to a year.
Then in January 2014, he had a seizure and it has been getting worse ever since. Doctors tried many anti-epileptic medications, but his seizures kept getting worse and developmental progress has deteriorated, said his mother.
“He will be having a 72-hour EEG, followed by meetings with two doctors and an additional day of testing. This is all to determine what tubers are causing his epilepsy and if they can reach them safely. These tests will tell the neurosurgeon all he needs to know about Aiden’s brain. We are all hopeful that he will be able to pinpoint a place in the brain that is causing the seizures and it can be taken out safely,” Danielle wrote in the email.
“The funds raised for our family has done so much good. We have paid off medical debt we have been buried under for years due to Aiden’s and my own medical bills due to chronic illness. We are able to book plane tickets for Aiden, his dad and me along with hotel stay. This expense alone will be close to $3,000. Without financial help, we wouldn’t be able to take him to Texas at all. We owe so much to all the wonderful people who have sacrificed to help us. We are so grateful to the community for the support,” she added.
Grandparents of the children are Philip and Eileen Myers and Daniel and Katrina Hoening.
The writer is a regular contributor to the Sidney Daily News.