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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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 needs  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.