Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Love Is Pain

 

 

Yesterday was a super emotional day for me. By bedtime, I was so incredibly spent and emotionally drained.  I can honestly say that hasn't happened in a while, at least not to that extent and it was all due to GM1. Fiona had so many seizures that I had to give her the rescue medication.  Her serious seizures are frightening for me, especially when she is gasping for air or stops breathing because I don't know if she'll recover from it. To hear such sounds coming from her mouth, whether it is a reaction from pain, sadness, or even involuntary, just scares me. The doctors tell us she's not in pain, but during her seizures my little girl’s eyes look so frightened and it makes me wonder.  To have to watch my baby go through such experiences literally leaves me feeling as if there’s a knife jammed in my heart.

 

I'm learning every day about GM1.  I absorb and process as much as I can. You see GM1 is so very complicated and smart; its  like its very own evil entity. Its goal is to rob, destroy and obliterate everything it can. I can't help but marvel at Fiona's particular rare disease.  GM1 has perfectly infiltrated Fiona’s body. The disease starts slowly and accumulates lipids in the brain then at a rapid and frantic pace the lipids intrude all of Fiona’s cells and destroy them.  So you fight back and at first the medications help, but somehow you can't get rid of the lipids and they continue to thrive in the brain and everywhere else. GM1 causes you to lose the ability to swallow, lose function of your arms and legs- never being able to walk or talk.  You take daily medication to prevent seizing, daily therapy and nebulizer treatments to prevent pneumonia, and then you lose your sight and hearing, you just lose all of your abilities.  There is no cure and a short-lived life expectancy of only 2 years.  Finally, you lose the ability to breathe.  Pneumonia sets in.  Life ends.

 

GM1 is an ugly and disgusting monster.

 

I wrote this post so people can see what some days look like in my home. This is the reality. This is the face of GM1, and its heart wrenching, horrible, and awful.

 

 

 

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