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...

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...

Why?

I put Sarah down for her nap and ate lunch.  Then I moved down to the basement office, I had bills that needed paid, farm bookwork, I needed to open mail.

I set my iced tea down and reached for the biggest envelope... better to start there right?  It was from our health insurance company and I scanned the pages.  Me, me, me, Luke, Marie...  Marie.  Her name, beautiful name.  Printed in black and white and a sight that used to be so common.  Her folder was over two inches thick from health insurance... all the keeping track I used to do.  And the date of service, February 6, 2008...  She wasn't even one then.  Now it is creeping up on what would be her fourth birthday... That was so long ago.

Three years ago with a sick baby in my arms that couldn't stop vomiting and they told us she was starving to death.  She was so tiny at nearly one... I remember it.  Only 15 pounds...  I held her in my arms all day long, every day back then.  She'd cry if I let her go and she hurt...  And I remember the doctor appointment they're suddenly billing for, three years late.

We had taken her down for a study, to see if reflux caused her pain.  I had to coax her to drink a thick pink mix, so stubborn even then.  I remember tiny brown eyebrows scowling at me and us just pleading "come on Marie, just a sip, please Marie..."  And the x rays showing her tiny organs, her tiny esophagus down to her stomach and the pink drink coming back up and the pain that reflux must have caused made my heart ache because she was just so small.  And nothing was working back then, we didn't know how to help her.  That was the day the scheduled surgery for her g-tube and the Nissen.  February 6, 2008...

So they billed us this February, for that appointment long ago.  I called them and asked why, why now, why three years late.  Why on a child that is... deceased.  It is a disgusting word.  Sliding off my tongue black and oily.  Deceased.  Evil word, not touching the emotions or the love still carried.  Just a vile word.

The woman was so businesslike.  She told me the account was closed, zero balance.  Then she explained the account is closed because my child is dead.  Thank you.  Thank you for clearing that up.  As though that is a fact that doesn't touch every corner of my heart, shadow every hour of my day, as though I wasn't aware.  I told her it was ridiculousness to even get this statement of benefits.  I told her when my insurance company received the bill, in 2011.  I told her how unhappy we are with Children's Hospital.  At every corner they have been too little, to late, to wrong, and they have never apologized.  We have been mid-diagnosed, double billed, asked to be studied, we have been moved into dirty rooms, we have notified them in a timely manner and still not heard from their grief program until she was gone six months and we were beginning to learn to live again.  But we always get their requests for fundraising dollars, they have no trouble asking for our money.  And I told her that we would choose another hospital if we ever needed that kind of care again.

The lady very politely offered to give me an email address that I could use to file my complaint.  She did not say she was sorry.  I told her it probably doesn't even matter anymore and hung up the phone.

Why?  Why today?  Why did I get this statement?  Why did I have to talk to that woman? What is the lesson I am supposed to learn from this?

It just hurts... because my Marie is gone, baby gone.  And I wish her back every day though I know God won't give her and I wouldn't take her if He did because she's Home... but the hurts no less.  And what am I supposed to learn from this?  Why?

Why this on a heart aching to plan a fourth birthday party instead of wondering how to fill those hours.  That day four years ago I labored long and hard and then she was...  Marie all dark haired in her Daddy's arms and we didn't know anything bad yet, we were just so happy.  Why this reminder as I come up on that day.  That she is gone, baby gone....  And she is not just some account.  She was Little Mama and we love her...

Why this, why today? 

Done...

I am done with that woman who has the cold voice.  I finished with her this morning.  After talking to the husband, and his father it became aware that I was taken yesterday.  She was calling to sell insurance.  It was not something decided but something she was pushing, making me think that I needed to do it.  And from there she invaded our accounts.  We didn't need to talk about beneficiaries, it wasn't the reason for her call.  But she took it there.

And I didn't need to tell her about our Marie, my father in law told them at the office, a long time ago.

And that made me a little mad.  So I called and talked to the man in charge.  I told him how that call made me feel...  How it upset me, and upset my husband, and upset his father.  All so she could sell some insurance.

And she isn't handling our accounts anymore.

In the words of Sarah Palin "you don't mess with a Mama Grizzly".  Or the mother of a special needs child.  My ability to tolerate being pushed around was maxed out a long time ago and I am still fierce about protecting us. 

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.

Meet Blye...

Is he handsome or what?  In real life that smile will knock you straight out. 

Blye is in kindergarten, he is part of our church family and he is in my Sunday school class.  I love seeing Blye.  For the obvious reasons, he is filled with a joy for life that is contagious.  For my own selfish reasons, he is physically much like Marie and in being near Blye it freshens my memories of her. 

I want to introduce everyone to Mr. Handsome because there are going to be some big things happening in his life soon.  God has his hand on this child.  Blye has cerebral palsy.  He has been approved for a special therapy in Germany that has the potential to really have a positive affect on him.  From a tiny farm town in Colorado all the way to Germany. 

Please visit his blog to learn more about him and what his family is doing to raise funds for the trip. 

If God lays it on your heart leave some words of support, or if you are able to contribute know that it will make a huge difference in the life of an amazing little man.  And make his Mama smile, she has a beautiful smile too...

Landon's Hope

What a beautiful day it was... Remembering Landon... and with every step remembering Marie.  Her smile, her joy, her love of life...  Surrounded by wonderful friends and family.  The weather could not have been more perfect.  There was a peace to the day and you could feel God with us. 

Those who loved her best...

Smiling through tears...

Missing our Little Mama...

Taking care of each other...

Remembering how last year Marie walked with us...

Balloons for Landon and Marie... and kisses sent to Heaven.

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!

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.

Rarrwww...

I am on hold, with medicaid. They are experiencing a high volume of calls. Poor them. Actually, poor them. I have a list of difficult to answer questions. I am getting pissed that it takes so long just to get answers to questions like "how long?" "who do I talk to?" "why when I told you I needed this did you not tell me that it was a service you offered"?. Things like that, questions I am learning people do not like to swear. *sigh*

So, I'm spending my time reading baby names. Mmmmhmmm. We'll keep number 3's name a secret until arrival but I can share some of the ones that I liked that Luke totally shot down.

Wait a minuet! Holy cannoli! A very agreeable woman just gave me the name and phone number of the person I need to talk to, to ask my very difficult questions! Being annoying and persistent pays off:)

So, in no particular order, the names Luke shot down, then I need to make a phone call:

• Karsten
• Abigail
• Maeve
• Marlee
• Crosby
• Jane
• Arabella
• Lucia (I know, it's bizarre, but I like it)
• Boaz (he was a farmer, I thought this would appeal to Luke, I was wrong)
• Bianca

At the end of another long week

Time is flying by right now. It seems like all our waking moments are spent playing, running, thinking, struggling... looong week.

The house is coming along, drywall is done and textured and waiting for paint. Unfortunately a plumbing leak in the guest bath required that a newly patched ceiling come down and lots of work be done but luckily Luke was able to do the plumbing himself. It should be ready for paint by next week.

Josie's last day of Preschool was Wednesday and we had a picnic at the park. Very cute to see her with her classmates. She is missing school already but with Vacation Bible School next week and gymnastics and hopefully some swim lessons starting soon she'll be busy before she knows it.

Marie's doing great, her allergies are not fun, but otherwise she's busy being two. Her attitude is showing more these days and I'm grateful to see her being a stinker. We're outside as much as we can be and she really loves that. She also gets so excited when it's time to go somewhere, she loves being out and about.

I've spent the week researching Medicaid stuff and came to the conclusion that we might be on the wrong waiver. Unfortunately, what I think is the right one probably has a waiting list of at least a year and I was told there are no exceptions, even if you have a terminal diagnosis. We're lucky to be on the Pediatric Hospice Waiver and have Medicaid as a backup plan, but the waiver doesn't have any services we need (insurance pays for hospice) and the other waiver I've found could benefit us. I'm becoming totally neurotic. I've spent at least two hours a day reading, bugging people, learning Medicaid, trying to find a CNA class in even our extended area that I could get into, and generally feeling like a dog chasing my tail. It is so stressful and frustrating, and to fight for your child and find little doors only to have them slam shut is just. tiring. Advocating is tiring. Seriously. It's my job, it's worth it, and for Marie I would do anything but emotionally it just drains.

I find myself in a place where I have to admit my weaknesses to people that I am not close to. I have to discuss Marie's life and the fact that while she is doing absolutely amazing it may not always be so and time is limited and explain why we just can't wait on lists for years to people that I've never met. It makes me mean, stressed out, short on patience, and in a whole fed up. What really is the worst is knowing that we have it sooo good compared to so many families that are just drowning while trying to cope with children who are fighting huge battles. It's just sad.

I find myself looking for things to remind me that the world has some good left. Looking for that and online classes to get my CNA which if I even think about it pisses me off a little more. I have a bachelors degree in a science field. I am intelligent, I know how to provide Marie's care better than any person on the planet, yet I need a certificate in order to be paid for the time I spend providing a highly skilled service. Did you know you don't even need a high school diploma to get your CNA? Seriously.

**I just realized maybe I should clarify what exactly it is that I'm fighting for. Pediatric Hospice Waiver provides respite care, but only if it's done by a Registered Nurse or Certified Nurses Assistant. That means a stranger would come into our home and that's who I would leave Marie with when necessary. Provided they be willing to take on Josie too. Right. I don't like this at all.

I have some very qualified girls who I'm totally comfortable with, do things my way, know to call me if anything even looks even remotely weird etc. They deserve to be paid for the level of responsibility they take on. I can't afford that. So, trying to get the state to provide respite care. They will if it's a CNA or RN. I'm not down with that, I want to leave Marie with someone who loves her, I want to leave my baby with the person I choose not someone who the state deems worthy because they have a certificate. Marie is incredibly special. I also cannot leave and have any peace unless the watcher does everything my way. My fear is, I can't trust a RN or CNA not to think they already know how to care for Marie. They don't, she's not their baby. I can trust my babysitters, even if they're not yet 20. They love Rie, they fear me, they are like family. I choose them, plus they're more than babysitters. They are providing specialized care, I trained them.

Of course there are CNA's and RN's out there who are wonderful. Unfortunately all the ones I know who are as wonderful as I think they need to be for this job work full time already.

Next step, I become a CNA myself so that the state will pay me for Marie's care (as her personal aide) and then I can pay who I deem worthy of watching my kids what they're worth. Only federally funded health care could make this so complicated. The fact is that the exact program I need exists (train and pay your own staff via medicaid benefit for a very select few, we qualify), if you're over 18 currently, or if you can make it on to a waiver with at least a one year waiting list it could be up to 3-4 years, no exceptions .**

But, we planted flowers this morning. I have the foundations of a pretty decent tan (skin cancer be damned, if laying in the sun makes me happy I will do it right now, thank you). My Josie and I are going to make rice krispies treats this afternoon. I'm hoping Luke will be home and not so tired tonight that we can maybe watch one of the millions of shows we have recorded that we never watch. It's no longer winter and Marie and I can be out and about. I actually took her to the grocery store yesterday, she was amazed.

So I have a lot to be happy about.

It's just that sometimes renovation on a house that is not going as planned, admitting that after over a year and a half of Marie being sick we need some help, fighting for Marie in an arena I don't fully understand, topped off by the fact that because we are in such a rural area there are a lot of things that are just not available no matter what I do... it just gets a girl a little down.

Hopefully next week I make some headway with things. As for the house, one hiccup in such a big project is not bad.

I am getting so excited for Landon's Hope Walk next week! It is going to be awesome to see everyone, and I can't believe how much money Tami has raised in memory of her little man. I'm looking forward to this so much! If you can, there's still time to join us there ;)


I just read my post and realized I sound like a complete control freak. I am. And a neurotic one. Don't mess with me ;)