Things I want to say

There are so many things I want to say. So many things that need to be heard.

My son reacted to my breast milk and doctors told me that wasn’t possible. Now our expired supply of formula is running out and there is no more to be found. I thank everyone for the support we had when we started this but now we need our followers to pull together again and show us love and strength.

After my son was diagnosed with Mitochondrial disease (MNGIE) I researched even more than ever before. The only things that they treat with this disease are symptoms. If he is in pain, give him pain medication, if he starts to lose his hearing, get hearing aids. If he can no longer have the strength to walk get him a wheel chair. This breaks my heart more than anything. Then I found that we could try a bone marrow transplant and it could (kinda reset his DNA) help him. We were given his little brother out of no where after being told that we couldn’t have any more children. Out of the blue God gave me a second baby. I prayed that if a second one could help Michael to please grant us a miracle. We went to Mayo Clinic last year and came home, when we got home we found out we were 12 weeks pregnant.

I can tell you that being able to hear Michael cry for the first time and hold him for the first time was the best feeling I had ever had. Then I got to do it again with Matthew. The hardest thing that my heart has had to feel is being told my first son is very ill. Though I knew he had to be more than just FPIES, it still hit me hard. I am happy to know what we are up against but very frightened.

We don’t have enough money for Michael to get a bone marrow transplant, we need your help. Insurance says that it’s still experimental and therefor won’t cover it. There are things we need to do in our home also to make Michaels life easier, such as pulling up the carpets and hard wood flooring the house, another thing we don’t have funds for and are asking you for help with.

Can you all help me reach out to people who can help us? I am a mother begging you for help.

 

Michael just woke up, more later

Life with MNGIE

Michael has now been diagnosed with the rare disease MNGIE which has only been diagnosed in 70 other patients. So before I thought FPIES was rare, this is even rarer. It is something that he will not grow out of as it is an error in his DNA. MNGIE is associated with many things, it explains his seizures, it explains that his bodys’ cells (mitochondria in the cell) are just too tired to break down food, so his body rejects it; it explains the weak muscles while he is reacting to a food. We try to keep his life as normal as possible and are not telling him how sick he is, as this is a big enough burden for me and a child should never have to know this type of thing.

Michael knows that he is not normal, he knows that he is different. He begs me for an apple, and I tell him one day we will find an apple that is good for his tummy. He then smiles.

Michael knows that things hurt his tummy but don’t hurt ours, he even thinks that things hurt little brothers tummy, because after all how do I tell Michael that his little brother seems healthy when Michael is so sick. We will be testing Matthews genes to be sure that he did not get the carried gene from Michaels dad, or me. If he tests and they are not present our next step is to see if his cord blood and tissue that we stored can will match Michael so that he can have a bone marrow transplant.

With this disease there is no treatment to help the person get better, just medications to help manage symptoms. If he is in pain, give him pain medication, if he is loosing his hearing, get him hearing aids, when he becomes unable to walk due to the dystrophy of his muscles, get him a wheelchair. Though I am prepared for it all, I do not want it to get that far, I want to halt it by getting him a bone marrow transplant which should help him stay better longer. Another girl with this has her bone marrow drive here.

More information

Our heart is very sad right now, but we are trying our hardest to fight for our son. To get him the help he needsĀ  click here to help.

This Christmas Michael won’t be putting out milk and cookies for santa, instead we will leave him hemp and sugar. Michael wasn’t able to accept the candy cane from santa at the mall, Michael isn’t able to help make cookies or gingerbread house. Instead here we are doing a food free day just as we did with Thanksgiving. We will have our parents over (after they eat breakfast at their own house) to come see him unwrap presents, and when they all get hungry they can go home to eat their supper.

The Muscular Dystrophy Association sees his disease and is willing to help with wheel chair assistance and such when the time comes.

We are trying to get help with other people reaching out for us, to get our community involved. To get the world behind our little boy to help us stay strong.

 

Simple terms: Michaels body has an error in his code, that makes Michael sick when he eats a food. The error causes seizures, muscle weakness, hearing and sight problems, it is pretty much his body shutting down. Now that we no longer have Neocate and they weren’t willing to admit a change to help people like Michael they left us out to dry. Michael is living on hemp and sugar, (Manitoba Harvest Organic Hemp Hearts, and Florida Crystal Organic Cane Sugar) because they are not cross contaminated with anything. Michaels bottles are only ever washed with one type of soap that doesn’t cause a reaction, Michael is washed with one kind of soap that doesn’t give him a reacting, Michaels life is the same day in and day out, because we can’t run to get dinner, or go to chucky cheese.

Just going out to the airport with his body run down caused him to get sick, and he isn’t fighting it as well as we are, because plain and simple his body is just too tired to fight. And we can’t do medications unless specially compounded for him, so he doesn’t get cough medicine like most children or adults.

I don’t even have it in me to call family members and explain what he has because then they will be sad, and by me hearing they are sad I become sad. We are lost and we are in need of HOPE.

Please help us with a Christmas Miracle.

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!