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My Story

Michaela lives with a rare and difficult to treat form of epilepsy called Lennox Gastaut Syndrome. LGS affects only 4% of children diagnosed with epilepsy, and is known by significant developmental delays, uncontrollable seizures, and a specific brain wave pattern. Thankfully, in August 2011--almost exactly 11 years later, the seizures stopped as mysteriously as they had started when she was 3. 

Unfortunately, she was recently diagnosed with an underlying mitochondrial disease. This disease process explains what LGS could not: why her body seems to be physically deteriorating, and not just her brain. Her cells can't produce enough energy for her to function correctly.


People find it hard to believe that Michaela was a normal, healthy child before the seizures started. But it's true: up until the age of 3, Michaela was an above average toddler. She had an abnormal propensity for music and art, and was very bright. 

But right after she turned 3, she started having seizures, and they pummeled her brain mercilessly until right before her 14th birthday.

The seizure onslaught on her brain has deteriorated her abilities, and she is significantly developmentally disabled. Curiously, she is developmentally the age of a 3-yr-old, even though she is 15:  which is the same age her brain was when she started seizing.

But beside all that, Michaela is a sweet child, very happy, very loving, quirky and funny as all get-out. She doesn't realize how sick her brain is, and when she's not seizing, she enjoys life and everyone in it.

***

On October 1st, 2010, Michaela's illness had taken a turn for the worse. Switching between constant seizures, and persistent psychosis--a devastating, yet common, progression--she was in and out of the hospital many, many times. The majority of that fall and winter, and then, the majority of the following summer. Drug side effects become a constant problem. There were very few drugs left that the doctors could use to help her, and so, we transitioned into a period of palliative care. Our main focus became making sure she could live at home and have as much quality of life as possible. Two things that were often in question. 

But in May 2012, she started to "snap out of it," and the lovable, quirky kid we had had before 2010 was coming back....to stay. She regained all of her previous abilities: playing, singing, talking, walking, and eating. We believe we had actually received our miracle!

Yet another, more serious, issue became evident: Michaela's body wasn't returning like her brain was. Her large intestine completely shut down, and her bladder worked sporadically at best. We were also seeing other troubling signs like, tachycardia, more illness (staph infections, pneumonia), and her skin turning purple. It became evident that there was something much more sinister than just LGS at play here. So we started researching and finding out what we could.

After a lot of searching, testing, and waiting, Michaela received the mito diagnosis in January of 2013. The unexplained monster, now had a name.

To learn more about Lennox Gastaut Syndrome:

To learn more about Mitochondrial Disease, visit:

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Kelly Morris posted a new journal entry, "Court Jester".

Happy Easter :) The history of this holiday is somewhat sketchy (like Christmas, it started off pagan and some dude in charge thought he should Christianize it), but the ... Read more

Marieke Dufresne signed Michaela's Guestbook.

Time to speak up to get things straightened out! I'm an RN and a chronically ill patient. When I get answers like ht from doctors who are new and/or clueless about my case ... Read more

Kelly Morris posted a new journal entry, "Black Sheep for Easter".

We've seen surgery a few times over the past 24 hours. They took off the dressing and we put a bag on the stoma for the first time since we got here. Granted, it was the ... Read more

Kelly Morris posted a new journal entry, "Blood and Guts".

She did end up getting the transfusion. Everything went fine, and her blood levels went up slightly. Not a lot, but it's at least going in the right direction now. Her ... Read more

Hayley kelley signed Michaela's Guestbook.

So sorry, poor M, poor Momma...just not fair. We have the same issues with the scary med btw, what we discovered I will share with you though is that when M has an ileus ... Read more

Kelly Morris posted a new journal entry, "Spoke Too Soon".

Well, the testing didn't show anything, that's still true. But we are back at Children's tonight. Why? Because the colostomy prolapsed again! This time worse! I texted ... Read more

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