Fiona Midori King

Fiona Midori King

Hope 4 Fiona

New Year's Resolution







My new year’s resolution is to write more blogs.  I’m aiming to write once a week but that may be a bit challenging depending on how Fiona is feeling, so at the very minimum I will do my best to write twice a month.


I experienced a heart stopping moment when we found out Fiona had GM-1, but nothing could prepare me for watching my daughter experience her first seizure in late October, which caused a decline in her overall health.


No training, literature or insight can prepare you for the horrendous, gut-wrenching experience of watching your child suffer through a seizure.  Although I have now experienced seeing Fiona suffer through a multitude of seizures, every time a seizure occurs it still feels like the first time.  There is an overwhelming sense of fear, helplessness, danger and frustration that comes with the inability to stop your child’s suffering while also witnessing the visuals of what is happening within Fiona’s little body.


We were aware that seizures were likely to occur with GM-1, so I always had that worry in the back of my mind.  Not knowing when the first one would happen, what it would be like, and how I would react was always a huge concern of mine.  I talked to other mothers concerning this topic, and I thought I had a decent idea of what Fiona’s first seizure would be like.  Little did I know that the reality of it all was nothing I could have imagined or been prepared for.  No matter how much knowledge I had going into the process, I will never forget the first encounter and all the dreadful emotions that came along with it.

The night of the first seizure, Fiona was fussy all night and was in some sort of pain. I held her through the night and continued to nurse her, but my maternal instinct knew something was not right. The next morning she ran a fever, and around 6:00 her lips turned blue. She completely stopped breathing-was flaccid and lifeless.   I was in a panic and screamed out to Paxton who came running into the room where Fiona and I were in.  He yelled at her name in desperation and slapped her cheek.  I heard the panic and fear in Paxton's voice, and felt so incredibly helpless as I watched my sweet baby girl in such a state....finally after about a minute she came back to us and started to breathe again.  Fiona’s entire right side began to twitch, and she twitched the entire time until we made it to the ER.  Our local ER refused to see us, so we had to drive 80 minutes to Rochester MN – to the Mayo Clinic ER.


I’ve been extremely concerned about Fiona’s health these days ever since the first seizure.  I experience an ample amount of anxiety worrying about when and where the next seizure will occur.  This week she's had mild seizures which last for 5-10 seconds.  That may seem like a short time frame, but for me it certainly feels much longer.


I will admit that now after witnessing Fiona having to experience all these seizures, I’m angry and have grown to hate this disease more than ever.  Although it’s a discomforting and frightful process to have to watch as a mother, I’m not angry about what I endure- I’m angry about what Fiona endures.  I find my heart breaking more and more each day being the person who so intimately shares with Fiona the negative effects of GM1.  I’ve noticed how deteriorating this disease has been to Fiona’s health.  I have no other choice but to fight this fight with Fiona and offer her all the strength and comfort I possibly can.  All I can do is take it step by step and day by day, and  sometimes hour by hour. Regardless of the sadness this disease brings into my life, it will never surpass the amount of joy that my little heroin has given me and will continue to give me for the rest of my days.





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