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Golf course superintendents are inveterate problem solvers but occasionally they encounter challenges that cannot be overcome, only managed. Sometimes those challenges arise away from the golf course just as Brandon Ingle and his family have discovered with their son Aiden. Aiden, nearing his fourth birthday, suffers a rare and debilitating condition that has required extensive medical care, highly-invasive brain surgery and a mountain of medical bills. And still he is not cured.
At press time, Ingle, 31, an assistant golf course superintendent at Linville Ridge Country Club in Linville, NC, and his family were about to embark on another long trek to Cleveland, OH for further specialized care. Recently, Ingle penned an outline of the journey Aiden and his family had already endured before hitting the road again. That account accompanies this introduction.
What that account doesn’t mention is the potentially crippling medical bills the young family has accrued. One surgery alone for Aiden cost $160,000. While insurance covers the lion’s share of the costs, when those fees run into hundreds of thousands of dollars, even the balance can be mountainous. To help the family meet that burden, Linville Ridge Country Club established a fund.
Despite the hurdles and the prospect of a lifelong battle for Aiden, his father, an 11-year assistant who worked at TPC at Wakefield Plantation previously, remains upbeat. “Nothing’s really changed. Aiden’s still having the seizures,” he says. “They can wipe him out for a day after he has one. But when he’s not affected, he’s a happy little boy. So we’re just moving along.”
Here is Brandon Ingle’s telling of his son’s story:
This is the story of the strongest, most amazing little boy I have ever known.
It all started October 1, 2007 when Aiden had his first seizure at just four months old. Aiden has struggled with intractable epilepsy every day since then. Having anywhere from eight to 10 clusters of seizures a day when it started to now having seizures that last six to eight minutes every other day that require emergency medication to stop.
We have tried - and failed with - everything. As a result of the seizures not being well controlled, when Aiden was six months old he developed a catastrophic form of epilepsy called infantile spasms. Infantile spasms are very difficult to treat and cause severe developmental delays.
The best course of treatment for infantile spasms is daily injections of high-dose steroids called ACTH. These are very expensive. One vial costs $34,000 and we had to have four vials to complete the month-long treatment. We began ACTH therapy just before Thanksgiving and by mid-December Aiden’s seizures had stopped. We were blessed to have six months of seizure freedom as a result of the steroids which allowed Aiden’s development to return to normal.
Unfortunately, our luck ran out May 24, 2008 when Aiden started having seizures again. We tried another round of ACTH but this time it was unsuccessful. Aiden’s seizures were becoming longer and longer. We tried 12 different anticonvulsant medications with him taking as many as five medications at one time, and endured at least 16 hospital stays for monitoring.
We even tried the ketogenic diet for four months, which essentially starves him so that his body has to use fats and protein for its energy source in hopes of slowing the seizures down, but yet again, there was no improvement. It seemed the only hope for Aiden would be surgery or trying one of the three medications we hadn’t tried but which have severe side effects.
We went to Duke in July, 2009 for a complete surgical workup. We stayed 10 days and underwent several rounds of testing for them to come back and tell us that he is having several mini seizures at night that we don’t know about, in addition to his “big” seizures that we have to give medication to stop. Even so, they didn’t feel he was a candidate for surgery adding that we should just “wait and see what happens in another year.”
Aiden’s seizures continued to worsen and worsen each time he had one and eventually in March, 2010 he woke up and was weak on his right side for about 10 minutes where he couldn’t even support his own weight to sit or stand. We decided to get a second surgical opinion at one of the top pediatric epilepsy centers in the country at the Cleveland Clinic in Ohio. We went there for a 10 day stay in April and by the end of May we got a long awaited answer to our prayers.
They were able to find an area of abnormal brain tissue on the left side of Aiden’s brain that no other scan had been able to pick up before that seemed to correlate with the seizure activity on his EEG. They felt that the only chance Aiden had of having any type of normal life and chance at seizure freedom would be to remove the abnormal tissue. So after much deliberating, we decided to proceed with the surgery.
July 15, 2010 Aiden had brain surgery to remove the left temporal, occipital and parietal lobes of his brain which removed all of the abnormal tissue - we hope- and left him with no peripheral vision on the right side. We spent two weeks at the Cleveland Clinic and another week at an inpatient rehab facility in Charlotte getting Aiden back to baseline following surgery.
I wish that I could tell you that Aiden has not had any more seizures following his brain surgery, but unfortunately that is not the case. Aiden is still averaging one seizure every five days that we have to give him his emergency medication for. It will take about six months for his brain to be completely healed from the surgery so we are hoping that as we approach that milestone the seizures will become less and less frequent.
Aiden’s development is delayed, particularly in regards to his speech, but each day he makes progress. Aiden amazes me each and every day with his strength and determination. He doesn’t let anything stop him from doing what he wants to do and he always has a smile on his face and a kiss to blow your way.
What can I say … he is a real life miracle! And we feel truly blessed that he is our son.
-- Brandon Ingle
To contribute to in support of Aiden Ingle’s care, contact:
Linville Ridge Country Club
P.O. Box 704
Linville, NC 28646
(PH): 828.898.5151
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