Mitochondrial Disease Awareness Week

Mitochondrial Disease Awareness Week is September 18-24. 

Mitochondria are:

• Tiny organelles found in almost every cell in the body.
• They are known as the "powerhouse of the cell."
• They are responsible for creating more than 90% of cellular energy.
• They are necessary in the body to sustain life and support growth.
• They are composed of tiny packages of enzymes that turn nutrients into cellular energy
• Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die there is organ failure.

MITO HAPPENS!  IT IS NOT AS RARE AS YOU WOULD BELIEVE!

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

THERE IS NO CURE FOR MITOCHONDRIAL DISEASE.

All families can do is treat symptoms, and try to slow the progression of the disease. 

Marie had Leigh's Disease, it is one of the most severe forms of Mitochondrial Disease.  She fought hard and we are so proud of her... still, there are so many children and adults who are fighting.  It is hard to loose someone to a disease no-one knows about or understands.

Please, in memory of our Little Mama pass along the information about Mitochondrial Disease this week.

You can learn more by visiting MitoAction.

On Wednesday join us in Light a Light for Mito and light a candle in memory of all of those who have fought Mitochondrial Disease and were called Home. 

Every day we miss our Princess... Please join us in the HOPE FOR A CURE!!!

Marie, wide eyed at the Downtown Aquarium in Denver, CO August 2009...

Prayer request...

Please pray for Abigail.  She is going through a hard time right now and my heart just breaks for her.  I wish there was more I could do but I know that prayer is powerful and it's what she needs most right now.  If you are moved please leave her parents your words of support.

Lord- please bring Abigail comfort, please bring her parents peace and the ability to accept your will.  Please guide the doctors and open their hearts to compassion.  You have a perfect plan for your beautiful Abigail, and we trust in you.  In Jesus name, Amen.

A Labor of Love...

Last year, July heat beating down while we watched our kids swim in the inflatable pool in our backyard my friend Brooke asked me a question.  "Would you help me" she said "get something going to redo the playground at the fairgrounds?".  I agreed, thinking of the baked in the sun, splintered wonderland that my girls don't play on. Too old, too dangerous.  And our county had just finished building a state of the art events center at the fairgrounds too.  Such a bummer.  It could be  great place to play.

Fast forward a few weeks and Brooke and I are sitting in a golf cart waiting for the parade starting our county fair to begin.  "We need something to make this project really special, to make it stand out", said Brooke.  "You know" I said, my mind on Little Mama, "it would be really wonderful if that park could be universally accessible".

And it began.  We worked fast.  We applied for a Great Outdoors Colorado (GoCo) Grant the end of August.  And we were turned down.  Not enough community support they had said.  Not surprising, we hadn't had much time to raise any.  And stubborn farm wives don't give up.  The team of four stay-home moms and the county commissioners had applied for other grants and we had received them. We worked hard, secured donations, raised support in the community, made pancakes, applied for some more grants.  And we applied to GoCo again.

Then in June sitting in the sun on bleachers watching Josie play t-ball against the team from one town over.  Another friend sits beside me and asks "did you find out yet, did you get the grant"?  Huddled together over a smart phone as our kids battle it out on opposite teams we pull up the website to see if GoCo had made a decision... and they approved us!  We received a $200,000 grant from Great Outdoors Colorado to build a universally accessible playground here in northeastern Colorado!

We are blessed to be able to put a facility like that here for children that don't have a lot of the fancy stuff you can find in the bigger cities.  For kids who have a hard time playing on the parks that are here now.  But soon, they will be able to play and be part of things, just like everyone else.   And that fills my heart like you cannot believe!

Because I think back two years ago, carrying our Princess Marie at the city park.  Daddy helping her through the parts that he could.  Me sitting cross-legged, the metal floor of the play structure cutting in to my ankles.  Holding her up and helping keep her hands on the wheel so that she could drive a pretend firetruck and we could see that smile...  And she was just a kid for a little while, having fun at the playground and she wasn't different from the rest of them.  She was happy, and that meant more than anything else.  Watching Marie play just like any other kid... priceless.  Watching her swing in her special swing at home, beside Josie, the two of them making memories.  Priceless.  My favorite memories are her playing.

And we will be able to share that with other kids.  Because they're out here, in this farm town.  In the other tiny towns surrounding us.  Over in Nebraska, those kids are there.  And soon they'll have a place to play and I am blessed to have gotten to be a part of that.

"I have yet to meet a child who isn't special and doesn't have needs...it's all just in varying degrees." Sandra Eller (mother of a child lost to Mitochondrial Disease)

It's been my labor of love, in memory of our perfect Princess.  My Little Mama, Daddy's Isabella.  Our Rie Rie.  If feels so good to still be able to do something good, in some sort of way, for her.

Busy days...

Summer has arrived here.  Josie has been out of school for two full weeks and it has been non-stop.  I actually don't like it like this.  I want slow, lazy summer days.  It hasn't happened yet but I know it will soon.  Sometimes I miss Marie setting our pace.  She slowed us down, made us appreciate things, kept us grounded.  Maybe it is Josie getting older, more involved but it seems that time is just passing far to quickly these days.

Landon's Hope was great!  We were so grateful to everyone who came and walked with us, and our team raised far more than our goal for the UMDF! 

Josie had her dance recital. She had been taking jazz classes since January and it was really wonderful.  She loves dance, we could see how much she practiced and how much it meant to her to do well at the recital.  She did great and it was so fun to see just how big she's getting.

Sarah is so busy.  I thank God constantly for her being able to be into so many things.  Her hair is not getting any darker, it's still white.  She reminds me of Marie more these days and I am grateful for that.  In so many ways I am lost for what to do with her.  It's been five years since I gave any thought to potty training and big girl beds.  Marie was a big girl too but it was so different.  With Marie I had to learn everything over again, and I feel that way with Sarah too.  I'm learning this all over again. 

Josie has been playing machine pitch t-ball for the last two weeks.  This Saturday is her tournament.  She really likes the game and it's fun to watch her.  She gets frustrated with herself easily, but I think it's a good learning experience.

This is my favorite picture that I've taken for awhile.  She looks so grown up, I'm really not sure when that happened. 

I will be 24 weeks Wednesday.  It's hard to believe we've gone through six months already.  In just four months we'll be meeting this new baby girl.  It's such a blessing, but I find myself struggling more these days.  I wish Marie were here to be going through this with us.  I want to share it all with her.  I can't imagine really who she would be a four years old.  She wasn't meant for that and in my heart I know it.  It's hard to accept, that I have a beautiful girl who was meant for greater things than this world.  Because I am grateful she's with Jesus, but as her mother I am selfish and I still want her here with me.

Luke is in the fields planting millet.  Only three quarters but it's good for the soil.  One up north and two out by the farm.  It will harvest in September when he'll swath it into windrows and leave it to dry.  Picking it up just before this fourth baby comes.  It's the continuity of it that brings me comfort.  He planted millet the year Marie was born, he planted it again the year after.  He is planting it this year, and he will plant it again the coming years.  The same kind of seed, the same soil, the same man.  Some things don't change so drastically.

Summer days oddly enough make me miss Marie.  Those were my last days with her.  The long, hot days of summer.  It will be two years and that makes me want to scream.  It can't be that long.  It can't be.  But it is.  And I can't stop time so we'll make the best of it.  The ache of two years for me is the being without her.  Little Mama is unaware of time, she's just where God meant her to be and she'll see me whenever I get there and she won't recognize that we've been apart for even a second.  And I think she's with the twin that vanished, the other little girl that we would have had, the identical twin to this baby that I'm carrying now.  We would have named her Jayne...   

Still, it's summer days and I need to turn off the water in the vegetable garden and fold laundry and carry the metal watering can around to the seeds the hose didn't reach and make Josie get dressed and do dishes and all the other work that God gave me to keep me busy and sane.  And I am blessed...

A Monday in December...

We had a good weekend.  Saturday we were around the house, Josie and I made some fudge.  I spent some time working on a few projects I wanted to finish.  Luke and Sarah have been fighting a cold so they rested, took it easy.  After how busy November was I am enjoying these slower days.  Yesterday was really nice so we got outside and went for a nice walk at the fishing pond.  I got a couple of really good shots of the girls and Cooper had a good time running.


We have the house decorated for Christmas, and I am so grateful to have a lift in my heart this season.  Last year Christmas was pretty tough...  December's have been hard for the last few years.

In December, 2007 we got the confirmation that Marie had Leigh's Disease.  It was overwhelming...  Looking back now Luke and I were talking about how little she was.  Only nine months old and tiny.  I remember the drive home from Denver sitting in the back of the car with her.  Talking about what we would do now...

Marie 3 years ago today...

Marie had some very rough days.  When we turned her care fully over to God, along with our wonderful Dr J and the brilliant neurologist Dr M she stabilized.  She thrived then and in God's hands, without the meddling of so many physicians we got to see her smile and enjoy her very, very good months before she was called home.

Some days it is still very hard to believe that she's gone.  So hard to believe that Marie has been in Heaven for over a year...  In so many ways I feel like I just kissed her goodnight a moment ago.

December's have been hard, but there is so much to celebrate too... It feels good to be able to find some joy this season.  I was so very lost last year.

Because of Mito...

Four years ago I didn't know what Mitochondrial Disease was.

Now...

Because of mito Sarah will grow up knowing her older sister only from pictures and videos.

Because of mito Marie never will go to preschool or have a first day of kindergarten.

Because of mito there is an empty chair at the table.

Because of mito there are many children we've come to know and care for that suffer so much every day.

Because of mito most of them can't say a word because it's robbed them of the ability to express themselves that way.

Because of mito I don't make oatmeal in the morning anymore.

Because of mito Josie can't talk to her best friend.  Her best friend is in Heaven.

Because of mito I've made some amazing friends, but if I was pushed I'd have to say I wish we didn't know one another at all.  I wish we didn't have this terrible disease to connect us.

Because of mito our hearts are broken.

Because of mito Marie never got to grow up...

We have had so many blessings in our life, and God has used this storm to draw us closer and grow our faith in ways that we are so grateful for.  I try to always find the praise in sorrow but the truth is its just sad sometimes.

Because of mito our second daughter is in Heaven.  We rejoice that we will see her again, but it is so hard to be without her here.

Because of mito I miss that smile...


www.umdf.org

Mitochondrial Disease Awareness Week

This is it.  Time to raise awareness and call attention to a disease that affects and estimated 1 in 3000 people.  A disease that no-one knows about, a disease that steals, a disease that kills.  Marie lived with Leigh's Disease (one of the many recognized forms of mitochondrial disease) for nearly 2 1/2 years before God called her home.

Leigh's Disease stole from her the ability to express herself, to move on her own, to hold her head up.  Marie never had the chance to speak a first word or to take a first step.  This disease left her in a body that was broken, a beautiful little soul trapped in a cage. She had a terminal disease and though her spirit shone and her smile was the most breathtaking thing I will see this side of Heaven we watched her regress and loose things.  We didn't have very long with her and though we were blessed by the time we did have there is just so much we missed.  So much that mito stole.

Please join me in raising awareness so that someday there will be better treatments, maybe even a cure.  So that someday I will be able to tell Marie's story without having to explain the disease she suffered from.  It is so hard to have lost a child to a disease no one knows anything about.

Please join me in spreading the word! For more information please visit the Mitochondrial Disease Action Committee, MitoAction.

Please pray for Abigail...

She's having a hard time and it breaks my heart.  You can visit her family here..  please join me in praying for comfort, guidance, and strength...

Being a mother....

A friend of mine posted this on her son's Caring Bridge site...  It is amazingly true.  Though my day no longer consists of feeding schedules or meds schedules I am haunted by their absence.  There is rarely a noon, 5pm, or 9pm that doesn't go by that my thought's aren't "I would be pulling meds right now", "we'd be settling in for a nap right now", "we'd be doing a bolus of water and a Hershey's kiss right now".  She was my entire day... I"m still lost without her...  Thanks Nena, and if you all can, say some prayers for Reese, and Miss Abigail who has completely stolen my heart, when you see her you will know why...

Being a Mother

Somebody said it takes about six weeks to get back to normal after you've had a baby.
That somebody doesn't know that once you're a mother "normal" is a matter of perspective.


Somebody said you learn how to be a mother by instinct.
That somebody never learned how to program a feeding pump.


Somebody said being a mother is boring. . .
That somebody never stood over their child and prayed they would make it through the night.


Somebody said if you're a good mother your children will turn out good.
That somebody thinks a child comes with directions and a guarantee.


Somebody said good mothers never raise their voices.
That somebody never yelled for their husband to, "quick run and get something to catch vomit in."


Somebody said you don't need an education to be a mother.
That somebody never spent endless hours on the internet researching their child's condition.


Somebody said you can't love an unborn baby as much as you love one that you hold in your arms, that certain things were "meant to be."
That somebody never lost a baby.


Somebody said a mother can find all the answers to her child-rearing questions in the books.
That somebody has never been handed a diagnosis for which no books have ever been written.


Somebody said the hardest part of being a mother is labor and delivery.
That somebody never watched her baby get wheeled into the O.R.


Somebody said a mother can do her job with her eyes closed and one hand tied behind her back.
That somebody never managed a med schedule, feeding schedule, nebulizer schedule, therapy and doctor schedule.


Somebody said a mother's job is done when her last child leaves home.
That somebody never had children who may never leave home. And if they do leave home, be it a home on earth or to a home in heaven, that child will never stop being a part of a mother's very being.


Somebody said your mother knows you love her, so you don't need to tell her.
That somebody isn't a mother. And that person doesn't know that a child can say volumes with their eyes or body language even if their lips never utter a single word.

Landon's Hope

This year Landon's Hope is going to be in memory of not only Landon but also Marie.  We have created a team just like last year and will be walking as Our Miracle Marie.  From our team page you can join the team or just make an online donation.  You can also print off a form to mail a donation directly to UMDF if writing a check is more your style.  We are really hoping that this year we can raise some serious money for the United Mitochondrial Disease Foundation.  All proceedes fund research, and our hope is that someday there will be a cure for evil old Leigh's Disease and the literally thousands of other mitochondrial disorders that have stolen too many children from their families arms.

In an effort to raise a little extra money my wonderful friend Tami and I have made up these bracelets, available in purple (because Josie says it was Marie's favorite color) or silver, in adult or youth sizes.  Adult bracelets are $5, childrens are $3.  You can send me payment via Paypal to shanschlachter@hotmail.com and I will mail your bracelet off to you so that you can show your support for Landon's Hope.  If you see us in "real life" you can just buy a bracelet from Tami or I also. 

Please help us to raise some cash, join us for a wonderful day at a really beautiful park and help us remember our babies, and know... we have hope.

1 Thessalonians 1:3 NIV

We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ.

Landon's Hope

There will be more to come on this soon, but for now just check out Landon's Hope.  We're going to put together a team again, Our Miracle Marie, and look forward to seeing you there!

"Light a Light for Mito”

In memory of Marie and Landon... healed...

Mitochondrial Disease Awareness Week

I can honestly say I hate Mitochondrial Disease, specifically Leigh's Disease.  It's a thief in the night, stealing babies far too soon, causing too much suffering... I hope that someday, there is a cure.  For more info on what we can do here in Colorado, how we can make a difference immediately, please visit Landon's Hope.

MITOCHONDRIAL DISEASE AWARENESS WEEK
September 20 - September 26, 2009 is International Mitochondrial Disease Awareness Week. During this week we renew our commitment to educate,support and advocate on behalf of mitochondrial disease patients and their families.

On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.

Facts about Mito:

• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.

• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.

• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.

• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .

• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.

• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.

Calling for support on H.R. 3502, Legislation for reasearch/awareness of Mitochondrial Disease

So, Mitochondrial Disease sucks. In fact, although I don't like the word, I'd have to say I hate Mitochondrial Disease. I hate Leigh's Disease specifically. I have watched it devastate families and steal babies from their mother's arms. I am blessed that Marie is doing so well, but my heart breaks at the though of another family walking this road. Luckily, progress is being made.

I am calling you to participate in supporting legislation titled H.R. 3502 which was recently introduced to the House of Representatives. "H.R. 3502 expands existing research efforts at the NIH and fosters greater coordination among NIH Institutes involved with different aspects of mitochondrial research to improve our understanding of mitochondrial disease and dysfunction and to develop treatments for mitochondrial disease."

All the info on this piece of legislation can be found here and there is plenty. From explaining what it is, how it will help, to a form letter all ready to email to you representative it's there. I sent mine yesterday.

Please help me in raising support for H.R. 3502!

I thought this was fascinating, it seems that Mito may be much more common than is believed and it affects even more families than those with rare diseases like ours. I've copied and pasted that info below from the www.umdf.org website.

MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.

Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:

• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.