Awareness Week, surviving life with Mito. . .

When someone asks me "what exactly is Mitochondrial Disease?"

I rattle off a number of facts to describe what this disease is and 

the devastating affects it can have on the person who is diagnosed.

"Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function.  In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. When mitochondria are not functioning correctly then the organs in our body begin to suffer"

But the truth is, MITO SUCKS.

And this is the true definition:

MITOCHONDRIAL DISEASE:  cruel.

When you're living with MITO, its with you all the time. Theres NO way of escaping it. Every day you know, when you open your eyes in the morning its going to be there, staring its ugly face right at you, quickly reminding you of all the affects it has on your child and your whole family. Not to mention the affects it has on so many other beautiful children and families that you've gotten to know so well over the years.

...and many are dying.

So how do I find peace?

...our child has the same disease.

what can I tell myself to reassure me that we wont be

the next family that will have to bury their child?

Ive been very emotional lately, trying to gather my thoughts so I could blog again. I feel guilty I haven't posted in the beginning of Mito Week, which is Sept18th-24th.

I'm thinking that most of you reading this right now already know all too well what this disease is and why its so important to spread the word and bring awareness for a CURE. But even if I reach one person, its important.



Jack has had a rough week. More testing, and very painful testing on Monday with some unexpected results that Ill post later about. Its been stomach pain, more fatigue, leg pain,  everything pain! and missing school all week... So I haven't had the time or energy emotionally to sit down and write... and to hurt. Sorry if this whole thing reads more like I'm rambling, and not written more beautifully. I don't think I was given that gift anyway (just saying)

so I cry.

every day.

I'm in somewhat of a dark place right now, trying to find a way to get back to doing what I always tell others...one day at a time and always look for the blessings. As I feel there really isn't any other way to live with Mito... but it's still hard. Seeing Jack struggle more this week is getting to me... where is my good friend "denial" when I need him?!

As I write this, there are many families dealing

with so much more than we are...than Jack is.

WAY MORE.

My heart hurts knowing that.

And I often feel guilty to ever complain, we are so very blessed that 

Jack isn't inpatient, he can still walk and we can still hear I love you's... 

He is HERE. 

Mitochondrial Disease is often difficult to explain and understand, theres such a wide spectrum of symptoms and severity. This is why its so undiagnosed, misdiagnosed and considered "rare" when its really not.



 "Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.  Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. BUT the estimates of the number of people with mitochondrial disease keep increasing as the medical community learns more about this disease. Right now the statistics show Mito is as frequent as all childhood cancers combined and, sadly, just as deadly" 

80% of children diagnosed before the age of 5 won't survive to be 20.

this is the worst sentence a parent of a child with Mito can type, or read.

HOW can one have HOPE knowing this?

so I cry.

I know families with children that never made it to their 1st birthday. AND families with children that are growing but are basically "stuck" as an infant, not talking or walking. Then there are families with children that appeared very healthy at birth and developed normally until their first seizure, then die only months later. AND theres families with children that had a very rough beginning but then stabilized some once they were a little older. AND families with children that started out with a rough beginning, and continue living inpatient for most of their lives, getting one infection after another...and still fighting...they are all still fighting.

And many families like ours...

 "He looks to healthy" to have anything serious we were told. "He will grow out of it" we were told. Jack was misdiagnosed twice. At 3, "He has hypotonic Cerebral Palsy" they said. At 4, "He has an unspecified myopathy" we were told... but I never felt either fit really, mostly due to his GI issues. So after many nights googling, I found a parenting board with kiddos that had something called Mito, my heart sank with each and every story I read... I knew this was it. Even though I was told, "He has a less than 1% chance of having Mito based on his normal muscle biopsy"   I pushed to see a mito specialist anyway. Finally our son was correctly diagnosed with Mitochondrial Disease, Complexes I+III and IV. By then, Jack was 5 yrs old.



A child born with "issues" but they were only minor in the beginning, nothing early therapy couldn't fix, we were told. But then over the months and then years, his issues have slowly grown into much bigger issues. Life changing symptoms, adding more specialists... every year even more issues and more organ systems affected.

PROGRESSION: cruel.

ALL of our families will experience this.

THERE IS NO CURE.

so one way or another whether it happens slowly or quickly... we're forced to watch our children fall apart. Only able to give supplements in hopes to slow the progression of the disease down.

THERE IS NO CURE.

I don't know how to handle that.

so I cry.

I also don't know how to handle watching so many other families ripped apart by this CRUEL disease. Every day so many are suffering. My heart aches for all our children, being put through so much in their short lives.

These photos only show a handful of painful procedures, therapies, ER visits and Hospital admissions our son has had to experience in his 8 years. AND this isn't even a quarter of what many children and adults with Mitochondrial Disease are put through.

can you imagine this being your child?

Someone you love?

AND my heart aches so for the parents that have had to bury their child... and are now feeling lost. After years of taking care of and loving on them... now cant. Its painful to think about, because this could very well be me one day.

so I cry. 

  

What if this was your child?

Sadly, there are too many precious children that wont make it, that wont be saved in time. But there are so many more that will if we bring awareness and get the same funding as Childhood Cancer research someday. So many families are affected and are suffering. Tell families like ours, we are WORTH A CURE.

PLEASE help spread

Mitochondrial Disease Awareness.

http://www.umdf.org/

blog it, share it!

it can save lives!