A New Path and a New Day

Michael’s parents have found hope in a possible stem cell transplant. His brother and him are being matched as we speak. Please pray hard that they are a match. If so then once the doctor approves and we get finances in line we can go through with this.

Michael is a fighter, Michael is our Miracle. He has made it this far and God has watched over him. But now is when we really need your help. We need to raise 10,000 for gas back and forth. We need to raise 5,000 for a special cleaning service. We need to raise a down payment, lets start with the minimum 25,000 and when we know more we can ask for more. We need to raise whatever the doctor tells us the cost is if your insurance isn’t able to be fought to pay for it. We really need your help. Every dollar counts in the fight to save little Michael. His disease is rare and would eventually take him to heaven. As greedy as this sounds I want him here with me as long as possible and this bone marrow transplant gives us that hope. Hope for a future, hope for our son to be able to grow up.

Anxiety is high in this house, worry is deep. We need support, we need you.

Please share Michaels story with everyone you know, please help us in any way possible.

http://www.youcaring.com/savelittlemichael

follow us on facebook http://www.facebook.com/savelittlemichael

send Michael letters of encouragement, or small gift cards for presents as he goes through this tough time.

Help us reach our gas goal and housing goal so that when the doctor says lets do this we are already prepared.

 

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From Mommy to Son

Dear Michael,

There is so much that I want to say to you, but I just can’t bring myself to say it. Maybe the time will come that I have enough courage to tell you.

“I will fight with you and for you for as long as you shall live.”

As your mother I have so many dreams for you,

I dream that one day you can live a normal life, even if for only one day.

I dream that you can do the American things, such as go to the movies and eat popcorn, or the ballpark and eat a hotdog.

I wish for you to one day say a foods name (any food) and me not cry.

I wish that someday we can find you a cure.

I wish for you to come home from kindergarten, blushing telling me how you kissed (insert name) under the bleachers.

I wish that one day you will grow older and that you will sneak my car out just to be sneaky.

I wish for you to call me in your desperate hour because you drank but don’t want to drive, because I will be there.

I wish for you to learn how to play sports, because I will be there cheering for you.

I am your cheerleader, I am your best friend, you are my whole world.

I want Matthew to grow up and know his big brother, not know of his big brother.

I want to be able to look at you and not at your grave.

I wish for you to get married and have kids of your own, because after all I would love being a grandma.

These are all just dreams of the future as we don’t know when your time will come, but I do know that I can not let it be now.

I know that I am weak, and that I can not loose you.

As I look into your eyes I see so many things.

I see beauty, and trust.

I see happiness even though your world has been rough.

I see the want to learn and do more.

I see that you love me too.

I am so sorry that mommy and daddy gave you bad genes, I know one day you may hate us.

I am okay with that, because it means you are old enough to be mad and understand.

If you are old enough to be angry with us and understand that means something went right, somehow you are with us.

God sent you to me, because he knew how much I would love you.

God sent you to me, because he knew I would never stop fighting for you.

God sent you to me, because he knew I needed you.

As I look at your 4 month old little brother, it hits me.

He sleeps through the night,

he doesn’t cry or vomit, or have diarrhea.

He has brown hair and brown eyes and seems nothing like you, but has that same lovely look in his eyes

He smiles, and has tummy time,  and loves laughing with you

But for all the sleepless nights with you and all of the horrible (I wish I could forget reactions) you and I have a special bond

I want you to know that I prayed for you

And I prayed for your little brother

I would pray every night that “If a younger sibling could cure Michael to please send us another Miracle.”

That Miracle will happen.

This is my promise to you.

My heart is breaking

Since our diagnosis my heart has been very heavy. This is hard to handle, knowing that Michael is 1 of 71 people diagnosed with the disease makes it so rare, it’s insane. But knowing that a bone marrow transplant may help prolong and make his life easier has helped me to gain strength. Because at the end of the day I will do everything I can to help him lead an easier life. I am his mom, I am his support. I couldn’t do it without our support. We have moms that help me stay strong and help guide us along this path. (FPIES moms) We have family who help us when we are really low.

It makes me feel bad to ask people for money, but at the end of the day there is no way we can make enough to help sweet Michael.

Please pray for a Miracle. Please pray for the help we need.

More later.

A new diagnosis…..

When you hear the words Mitochondrial Disease your heart drops to your feet. It is like hearing your son has a cancer than is not treatable. For Mitochondrial Neurogastrointestinal Encephalopathy there is no treatment except to treat symptoms. Treat pain with pain medication, get a wheel chair when they lose their ability to walk, get hearing aids when they can no longer hear, have therapy the rest of your life, and know that you are lucky to live to 30 years old. Well with Michael if his brother is a correct match and doesn’t have either gene that he inherited from us, with a bone marrow transplant Michael may live a longer more “normal” life.

Michael is living on hemp hearts and sugar. We have found out that one of Michaels main reactors is corn and with Mitochondrial that makes sense as his mitochondria are just too tired to digest carbohydrates and corn is hard to digest. I have learned so much from wonderful moms on our journey, but I am asking everyone for help www.youcaring.com/savelittlemichael as we can not afford this on our own. Thomas and I had Michael as newly weds, we wanted to have children young and we felt ready. Neither one of us knew that we were carriers of bad genes as neither one of us had any major medical issue. We have come together stronger to help our son Michael fight. Starting two years ago I prayed daily for a miracle, part of me thinks that Matthew is Michaels miracle. Matthews cord blood could save Michael. I could have two happy, healthy boys.

There is so much going through my head, and the hardest part about all of this is that we finally found out the week before Thanksgiving. A time to be happy and thankful with family, instead of the typical cooking all day to sit around and eat all day, I blew it off. I didn’t cook anything, in fact my father-in-laws wife dropped off food for us to sneak-eat in the kitchen. We gave thanks that we have our little boy and that we still have enough courage to fight for his life. I saw this coming, ever since we got his genetic profile, just wasn’t sure that both of us had given him the gene. We did, and I feel awful, but I would have Michael all over again.

Michael opens up peoples hearts, he makes you smile even if you are a grumpy man standing in line in the biggest rush of your life. He just does something cute that makes you smile. He calls everyone pretty and thinks that everyone is good. People flock to his smile and say his laugh is contagious. He is my whole world and I love him, this is my letter to the world begging you all to help me save my sons life.

MNGIE is not kind, so let’s fight hard!