Friday, September 21, 2018

A Little Light :) By Angela


What a great way to end our week. Thank you Angela!
A Little Light

There have been so many topics I have considered writing about during this Mitochondria Awareness Week, then out of the blue on a busy evening here at our little farm came a call or should I say missed call.  Now when you receive a phone call from your son’s Mito specialist from his cell phone after clinic hours a million things race through your mind and not many of them are good.  So, when I hear the voicemail to please call back as soon as possible I got butterflies in my stomach.  Not the good kind when you are excited or giddy.  The kind when your nerves are on high alert and you kind of want to just throw up. Unfortunately, when you are a mito parent you know this feeling.  There have been many times when I have been nauseous with anticipation of what a doctor, specialist, or therapist was about to say. I have literally never had an afterhours call that has been positive.

                I immediately called back and was welcomed by some positive and exciting news!  So, our amazing Mito team at Children’s hospital has been working on some treatment with blood and getting really promising results.  They are trying to get a grant to further their research and need two patients’ blood to treat and submit the results.  Our Dr was calling to see if we would be willing to donate Cal’s blood because they thought they would have a great chance to show positive results with Calvin’s in particular.

                Yes, I know it’s not a cure or even a treatment but it is a little light.  This disease can be very dark and there are many lows so when you get a light you take it.  It may seem very minor to most people but mito parents hold on to the little lights and moments of positivity.  We can all appreciate the small movement of progress and hope for a snowball effect, for the science to some day take off like wildfire.

                When you are told when your child is about two years old that you should take him home and love him as it is not real likely he will live past three years old.  We were also told by doctors we’re very sorry but there was not treatment and it was not foreseen that would ever be.  Now during the Mitochondria Awareness Week there is light and hope!  Calvin has already been involved in one FDA trial for a medication for mito and now his blood will help continue research toward more treatment.  So love what your mitochondria do for you and we will continue to love and celebrate the progress and hard work that our team of doctors does for Calvin’s mitochondria.

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