a WEEK, Mitochondrial Awareness Week!

It seems like a lifetime… for one is was!

It seemed like no one understand… for one family, we did!

It seemed like there was no answer… there was one!

It seemed like we couldn’t help… for us we couldn’t

It seemed like we were okay… for one he wasn’t.

It seems like we moved on… for us, we are working on it!

 

Mito awareness week… I skipped it last year; I was hurt that my son who fought so hard lost his battle.  I was mad at the people that wanted to tell me to get over it or just deal with it.  I was mad at losing my friends who couldn’t deal with it all.  I was mad at loosing people who said they would be there but it was too close.  I was mad that people wanted to tell me that I was too sensitive and that I couldn’t be part of the mito world any more.

 So this year I am here choosing to say that I am part of this world and that you are not alone.  That mito does have some parts that suck and I am here to tell you that it wasn’t ALL bad.  Mitochondrial disease took my son’s life but my son lived his life to the fullest while he was here.  Zach had a smile that was wonderful and he loved everyone that he came into contact with.  He didn’t know he was sick.  He went to school and to church when well.  He played with his brother and loved Daddy time.  It wasn’t all bad. 

 

This week is about awareness… yes, Zachary’s story could end at his death but it isn’t.  We are choosing to spread more awareness about the disease that took his life.  He would have wanted that, we are taking things to the hospital in his name to continue his legacy. 

Mitochondrial disease: what is it?

Every cell in your body with the exception of red blood cells have a mitochondria, they are the powerhouse of the cell.  Simply put they are the batteries that allow the body to work.  Because of this mito can affect every part of the body.  It can be severe or not noticeable at all.  A person affected by mito may have periods where they are able to walk, talk and do all the things that they want to do.  Then they may also have times that their body has to make a priority of what is more important breathing or another skill.  Zachary had moments that he could walk, talk and do all the things that his little heart desired then there were days that he couldn’t even hold his head up.  We learned that Zachary’s GI tract was affected the most, which is why he needed a GJ tube (a tube going into the stomach and into the intestines from the outside of the body, it kinda looks like what you would blow a beach ball up with) and why he had to have tpn (when he was feed directly into the veins).  He had trouble growing and maintaining his weight, when he died a week shy of his 4^th birthday he weighed a little less than 17 pounds, this is smaller than most 1 year olds.  As mito progressed Zachary needed help with breathing and had to be on a bipap machine to help him breath at night and oxygen during the day.  He also needed blood transfusions and help fighting infection.   He looked good though, He laughed, we allowed him to do all the things that his heart desired.  He was worth that and we tried to make sure that he did all the “normal” 3 year old activities. 

At the moment there is no real treatment or cure for mitochondrial disease, which is heartbreaking but the truth.  Many of the things that are done to help the people with mito are temporary fixes.  Research is happening but we need more.  Awareness is happening but we need more.  MITO NEEDS A TREATMENT, IT NEEDS A CURE!!!

The severity of mitochondrial disease symptoms is different from person to person. No two people are affected the same way. The most common symptoms are:

·         Poor Growth

·         Loss of muscle coordination, muscle weakness

·         Neurological problems, seizures

·         Autism, autistic spectrum, autistic-like features

·         Visual and/or hearing problems

·         Developmental delays, learning disabilities

·         Heart, liver or kidney disease

·         Gastrointestinal disorders, severe constipation

·         Diabetes

·         Increased risk of infection

·         Thyroid and/or adrenal dysfunction

·         Autonomic dysfunction

·         Neuropsychological changes characterized by confusion, disorientation and memory loss.

How common are mitochondrial diseases?

·         About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years.

·         One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

·         In adults, many diseases of aging have been found to have defects of mitochondrial function.

·         These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria

 

Will you help me bring Awareness to this disease??? Will you learn about mitochondrial disease? If you don’t know please learn.  If you have questions please ask! On facebook? Please like and share http://www.facebook.com/#!/RememberingZachary  as we are choosing to honor Zachary’s legacy by providing things for Scottish Rite CHOA.  I will go in two weeks to take stuff for “BACK TO THE HOSPITAL” which is school supplies.  In February I will be collecting STICKERS, which was Zach’s favorite thing ever and take them to the hospital to brighten days!