Fiona Midori King

Fiona Midori King

Hope 4 Fiona

My Little Girl - Sunday - January 29, 2012



When Fiona was diagnosed with GM1 gangliosidosis, our world fell apart. We were absolutely distraught, heartbroken, devastated, and felt alone. I remember how badly my heart hurt and how heavy it felt.  We did enough research to know that our time with her would be short. The hardest part of all of this was that there was nothing we could do to stop it. But that was the reality of the disease.....There is no cure or treatment for GM-1.
Fiona is doing well these days. Our last visit at the Mayo two months ago show MRI of the brain to be normal, brain development appears normal, x-ray shows mild skeletal deformity, bloods tests show no enzyme activity (we were hoping that there would be some enzyme), ultrasound of liver shows mild damage, first states of blindness (ganglion failure) showing in both eyes. She is behind in her motor skills. She can’t sit up by herself, turnover, crawl, or do what 8 month child would be able to do, but she has mastered the thumb sucking technique. If this was to be measured as a milestone, she would excel in it. I keep thinking that children learn at their own pace and as long as she’s doing most of the things that she should be doing for her age, I need not to worry…..but I do.
I struggled to understand the scale of Fiona’s disease and how I am meant to help and care for her. It is a terrible thing to live under the pressure of a diagnosis with no cure; it's just as disheartening to hear as a parent that your child may not live to the age of 2 and to start preparing yourself to let her go. But what do you do when you discovered there’s no cure for your child. Do you curl up in a ball, lying in a corner? Do you spiral into depression? Do you dread the future for its uncertainty? No. You take a deep breath and remind yourself that this is still your child, who you love so deeply and you’re going to fight for her.
I began to look at Fiona and think, “I am so blessed to have this special child. Of all the women in the world, I was chosen to be her mother. God felt that I was worthy enough to entrust me with the care of one of his own. God knew I would fight for her. She is everything to me and I will never stop fighting for her."
People have asked, "How do you stay so strong?" I don't.  I am not strong, but my God is strong. His love is strong. He gives me the peace and joy to go on every day. In every tear that I cry, with every pain that I bear, God sees them all. And He comforts me with these words: Trust in the Lord with all your heart and lean not on your own understanding; and in all your ways acknowledge him and he will make your paths straight Proverbs 3:5-6 and In Christ alone my hope is found. He is my light, my strength, my song.
Fiona is a happy little girl who loves to laugh and play and doesn’t know that she is different. I am so thankful for that. Aside from the long diagnostic process, the emotional trauma we felt of the diagnosis, or the endless string of medical appointments, she is everything to us. Fiona does not chose to lie around all day and act unresponsively; instead, she squeals at the touch of her father’s tickles, smiles when I sing her sweet lullabies and chats away when she’s in the mood. We treasure these moments of accomplishments. It’s exciting when any baby reaches these milestones, but when you are told to expect the worst and the opposite happens-those moments mean so much more and are treasured forever!

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