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

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2 comments on “Things I want to say

  1. My brother’s son couldn’t digest the breast milk either. It’s rare but it does happen. Hope your son would be able to adjust to the milk in the next few weeks.

  2. Don’t give up hope, The protocols for the stem sell transplants are getting closer. In addition there is a Dr in London (Dr. Bax) who is working on a new drug that is working on some patients with MNGIE, still experimental but the studies should start later this year. My Wife was diagnosed in April and I have been doing a lot of research on this monster. I would be happy to share my research with you if you would like. e-mail ajjmo@aol.com

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