MORRISTOWN, NJ - A little over three weeks ago, Terrence Merrill, a former personal trainer at the My Training Gym in Morristown, received some devastating news about his five year old daughter, Leila.

In a video post, Merrill tearfully announced to his friends and colleagues that Leila was diagnosed with a terminal degenerative neurometabolic disorder.  In the post he says "things haven't been very smooth, really from the get go."

According to a GoFundMe Page, she was diagnosed with Sanfilippo Syndrome Type A. Currently, there are no treatments or cures for the disease, the post stated. According to Merrill, there are promising clinical trials that he hopes to get Leila into.   To date, his page has raised over $14,000 of a $100,000 goal. Merrill's goal is to prevent this tragedy from happening to another family.  

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According to the Sanfilippo Children's Foundation, Sanfilippo Syndrome is a rare genetic condition that causes fatal brain damage.  The foundation states that over time, brain cells fill up with waste that the body is unable to process. As the brain gets progressively damaged, children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, cardiac issues, seizures, loss of mobility, dementia and finally death, usually before adulthood, the foundation states.

"I'm very thankful for what I have and the little time I might have with her", he said. "My daughter is as happy as can be and very loving and sweet. It's hard to see her go through what she's going through. I feel like I've cried everyday for a year now and this week was very tough to find out that there it's very fast and very progressive".

"I didn't make this message just to talk about how incredibly hard everything is", he said. "During times like this, everyone reflects and says, oh man, I really had it great and maybe things weren't so bad. Sometimes it just takes somebody who is going through something to let you know that you aren't alone and cherish what you have because whatever the situation is, it can always be worse, even if you don't think so".

"As a personal trainer, Merrill has helped the people make positive changes to their nutrition and health,"  said said former colleague, Andrea Bopp. "He is one of the kindest, most giving people that I know."

Even though Merrill is going through the unimaginable, he still tries to motivate and inspire others.

"It's easy to take things for granted, especially with the way life is but don't because you don't know what tomorrow will bring", he said. "Cherish the time with your family and mend those fences if you have problems. No problem is too difficult to overcome. Maybe there is someone close to you that is in a similar situation to me, so feel free to share this message. If there is anything I can do to help, I'm there."

He concluded by saying, "Thank you all for being there for me." 

If you would like to "be there" for the Merrill Family by donating to their Go Fund Me Page, click HERE

 

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