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Michaela’s 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:

Latest Journal Update

Breathing

Sorry for the long wait.


It seems like I hold my breath when it comes to these things: the times when she looks bad or scares me. I definitely get on edge, and my emotions are on overdrive.


I got in touch with Dr. Ness and asked her if she would have any time to look over the EEG with me. Most of the time, they make you wait a couple days for results. But I enjoy having a relationship with this doctor where I can just be real with her and I know she'll shoot straight with me-and I needed answers that day. At this point, she about knows Michaela as well as Chief, and I feel totally confident in her ability to manage our care. With any other doctor, I would likely want Chief's official last word. But with Jayne Ness, it's all good. She's like an extension of Chief's brain, in my mind.


We met when she was out of a meeting, and she looked through the entire test with me, going back to analyze small details.


There was nothing.


The test showed no seizures.


To say this was a relief is only stating half the story. What I didn't mention, is that Sunday had been a bad day for Boo--she barely moved, or talked, or played. When she did anything, it was like she was in slow motion. Her pupils were still widely dilated, and she stared off randomly. The most concerning thing was intermittent eye fluttering. Her eyes would move to the left, and she'd blink for no apparent reason.


I've seen tons of kids do that in seizure videos.


But Monday was a different story. She woke up more like herself than she had been in days. She talked more, played more, moved more. It was like watching a flower open in the sun. I was guardedly optimistic in the drive back to Children's.


And then the test confirmed what we were seeing.


So add her metamorphosis with the test results, and I finally felt like I could breathe for the first time in days. I think I yawned and sighed every 5 minutes on the drive home. My body was starved for oxygen that I had been withholding for 4 days.


WHY she was acting the way she was...well that's still a mystery. Dr. Ness had no solid ideas to offer. She thought maybe it was the result of coming off a long hospital stay. Meh. I doubt it. It's never affected her behavior like that before. I theorize that the new antibiotic they put her on was the culprit. It started on Monday, and she got her last dose on Friday. It makes sense in the timeline.


Whatever it is, it's the mercy of God. My heart and mind was overwhelmed with the idea of reliving Fall 2010. I was really just a wreck. I wanted to run away, but instead I dutifully kept my bag packed and in the van, waiting for the ax to fall--moving through the days like a zombie.


I'm so glad seizures aren't in the picture. They are still on the radar-her last dose of Felbatol was Tuesday-but they aren't my reality. We still need to get her blood levels redone in 2 weeks...but I'm living in the moment right now, and not worrying about it.


I'm just enjoying breathing again :)
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Comments

4 Comments

Debbie Akers
By Debbie Akers
Sending love!
Kathy Brockman
By Kathy Brockman
Continued prayers for Michaela.
Christy ❤✞✞ Amy's mom ❤✞✞
By Christy ❤✞✞ Amy's mom ❤✞✞
Praying for you guys - hope every thing calms down and you have a wonderful mother's day - you missed Easter - well sort of :) you know the real reason for the season. God bless and keep your Michaela
marilyn bergagnini
By marilyn bergagnini
WOWM GRT NEWS....MICHAELA DESERVES A BREAK AND NOW SHE GOT IT WITH NO SEIZURES!!! THANK U LORD....GOD BLESS YOU ALL AND HUGS, MARILYN