<div>My name is Michael Bogarde, and I am asking for help for my son, <strong>Michael Zachary Bogarde, 10 months old</strong>. He was recently diagnosed with <strong>Leigh Syndrome, a Mitochondrial disease, type ATP-6</strong>, the worst case of this horrible disease. Mitochondrial disease is basically your body's inability to make energy out of the food you eat. He has been getting treated for acid reflux for 6 months. We actually went to a GI specialist down at CHOP after irrational behavior, developmental delays, missing milestones, and weight loss month after month. Finally, they did blood work for the first time, and by the time we got home from CHOP, we got a call saying his blood work came back and it was not safe for him to be home. We had to bring him to the ER immediately. In a matter of 18 hours, our whole lives were turned upside down forever. 94.7% of his cells are affected by the disease, which is a high amount. He went into a state of acidosis, which an MRI later revealed he suffered irreversible brain damage from, in the parts of his brain that are for mobility and development. We spent 24 days in the children's hospital and have been out of the hospital for a month. The doctors and social workers told us that neither one of us will be able to work a regular job anymore, that it is going to take both of us and additional help just to get him through everyday life. They told us that our only option was to file for disability and find a home healthcare agency that deals with rare diseases and for one or both of us to become caretakers for him. His muscle tone is so low that we have to do everything for him. He's eating and getting meds through a feeding tube down his nose. They are not sure if he is even going to learn to walk and talk. We have to do intensive physical, occupational, and speech therapy a couple of times a week. Doctor's appointments usually number in the double digits for the week, with all the specialists involved, and half the appointments are down at CHOP, an hour away. The fact of the matter is this Leigh Syndrome has a life expectancy of less than 3 years. There is no cure or treatment for Leigh Syndrome, only a group of vitamins and supplements that we can give him in hopes of keeping his body from regressing any further, so to buy time, in hopes that an advancement in science comes to find a cure or even treatment for this disease. So of course, life stopped for me and my girlfriend when this all started. She was let go from her job of 18+ years ,she never  went back to work in February after maternity leave. I was working, but after 3 and a half weeks in the hospital and then coming home and realizing how much work it is just to get through a day with my son,  I'm not gonna be able to leave her by herself everyday and go to work. It's just not possible,And also, we currently don't have a vehicle. we lost that when she was let go from her job, And on top of the guilt we feel for having to look into his eyes every day and just know how much pain he's in and looking for us to help and we can't do anything for him, there is the stress of the financial aspect of this diagnosis. Without stable housing, we lost our apartment when my girlfriend lost her job, so now we are staying at my mom's apartment with a sick infant. We don't have a car to get to our doctor's appointments, so while dealing with all this and at the same time watching my 10-month-old who seems to deteriorate day by day, we are both  struggling to keep our  sanity. It's such a mental and emotional toll it takes in a person to watch there baby go from acid reflux diagnosis to a deadly rare genetic disease that is already severely affecting him.<strong>So anyone who can help, I appreciate it sincerely.</strong> We have a long, uphill road ahead of us, but I believe in God and the power of prayer and the good in human beings to help others out when they are in need. 
</div>

Tracey Bogarde

Jacqui Miller

Anonymous

Vanessa Berrocal

Colleen Meehan

Sherrie Nicole Hannah

Justin Russell

Barbara Carter

Russell Chmieleski

SUPPORT BABY MICHAEL 'S FIGHT AGAINST LEIGH SYNDROME

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SUPPORT BABY MICHAEL 'S FIGHT AGAINST LEIGH SYNDROME

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