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.


One comment on “Life with MNGIE

  1. My heart breaks for you and Michael. I know what you are going through, my wife was diagnosed with MNGIE in April 2013, and we are having a rough time accepting the changes and losses in her life. She is no longer able to work, we had to sell her car as she is not able to drive anymore, and she is mostly bound to a wheel chair to go anywhere. We were able to get her a power scooter to go to the park and get around the subdivision. We have been married for 37 years, have two daughters and one grandson, that we pray is not a carrier.

    our prayers are with all of you and Gods blessings on you. Be strong, I know it is hard for a care giver.

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