Parents of Boy with Brain Disorder That’s ‘100 Percent Fatal’ Raise Money for Gene Therapy Clinical Trial

gofundme Connor

The parents of a boy with a rare, fatal brain disorder are raising money so he can participate in a gene therapy trial that has potential to stop the disease.

Marisa DiChiacchio and Mike Dobbyn’s 12-year-old son Connor has Sanfilippo Syndrome Type C, which is a rare degenerative brain disorder that is “like Alzheimer’s, but in children,” according to a GoFundMe campaign created earlier this month.

According to the campaign, the syndrome is “100 percent fatal” and has no cure.

“As the degeneration rapidly progresses, Connor will stop walking, stop talking, stop being able to feed himself,” the GoFundMe campaign says. “He’ll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then he’ll die.”

But Connor’s family is raising money for the Cure Sanfilippo Foundation and a gene therapy clinical trial that needs funding at UT Southwestern in Dallas, Texas.

gofundme Marisa DiChiacchio, Mike Dobbyn and their sons Keenan and Connor

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“Research for this gene therapy has shown in pre-clinical models that it can stop the disease,” the campaign says. “This clinical trial is the crucial step of determining whether earlier research is able to show the same therapeutic benefits in children.”

“It was like a bomb was dropped on us in the geneticist office,” Connor’s dad told CBS Philadelphia of the moment they learned of his diagnosis. “I just remember it was a life-shortening condition, the geneticist actually told us at the time, ‘Don’t Google this yet because we don’t have a 100 percent conviction on this diagnosis yet.’ “

gofundme Marisa DiChiacchio, Mike Dobbyn, Connor

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“We knew Connor obviously was special and loved and adored by so many people, but sometimes you just don’t realize until something devastating like this comes out,” Connor’s mother added. “And just everybody comes out of the woodwork trying to help and wanting to help. So he’s like our local community rock star.”

As of Wednesday, the campaign had raised $172,210 of its $3,000,000 goal. 

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Money Can’t Buy Fitness, You Gotta Earn It

It’s long been said that money can’t buy everything and most will agree if they are truly being honest throwing silliness aside. Money can’t buy you true love. Money can’t buy back your youth or bring back loved ones that have passed on. And additionally, money can’t buy fitness no matter how much you shell out of your pocket.

To make that point clear, all the money in the world cannot automatically create that perfect physique regardless of how much you are willing to pay. Sure money can pay for a private gym membership or even allow you to build your own gym in your backyard. Money will also allow you to hire a 24 hour a day personal trainer along with a chef to be at your beckoning call whenever you need a healthy meal prepared.

Money can also pay for weight reduction surgeries or “tummy tucks” which can give the appearance of a reduction in weight. However even in this case the person is not fit, they just have less fat – completely different case.

However even with these things that money can potentially buy, they will not magically get you fit. The sweat and effort will still have to come from you and that is something money cannot buy.

You have to earn fitness and that is the beauty of it. No matter how rich or poor a person is, fitness is something that judges not on how financially well off you are.

If you’ve ever seen Brad Pitt in the movie Troy, Henry Cavill in Man of Steel, or Chris Hemsworth as Thor in the Avengers, these famous actors had to workout constantly and eat nutritiously for a number of months in order to develop the physique needed for their roles.

Don’t believe me? YouTube or Google their workout and nutritional regiments and you’ll see what they had to do in order to get in shape. Even these rich, famous actors had to put in the time to get fit.

Once you come to terms with this fact, you will see that money cannot buy fitness, it is something that has to be earned. If it helps motivate you, just maintain the mantra “If Brad had to do it, I can do it!”

Take it upon your shoulders and commit yourself wholeheartedly to a fitness plan. Be willing to exercise 4-6 days per week for a certain amount of time even if it’s just for 20-30 minutes when beginning.

Everyone has to start somewhere, but the point of the matter is to start.

Naturally this habit will take some getting used to, but the better you stick with your fitness plan, the quicker this will truly become an important part of your life. Once you adhere to your workout routine for a certain amount of time, you will realize that money really can’t buy fitness. You’ll only get fit through hard work and determination.

Don’t forget about the importance of tying healthy nutrition into your fitness …

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