It's Mitochondrial Disease Awareness week. It's the 2nd time we have had to live through this week with out our little boy.
It's been a hell of a time these last 2 weeks for our family.
Benjamin ended up hospitalized 2 weeks ago here in Wichita. We were there for 5 days. They ended up dropping and NG and we started tube feeds to boost his nutrition. At that point he was sent to KC where we were inpatient 7 days. They did all of the GI testing virtually possible, expecting to find nothing medically wrong. Surgery was scheduled for Monday to place a Gtube. Then with one biopsy result everything changed. Benjamin's results should probable for EoE . WOW. All plans changed. Protocol dictates the Ben does an 8 week trial of a medication, although research and the doctors aren't confident that it will make a difference. Ben will be back at the end of the trial to re-do the scopes and biopsies. The possibility still remains that he will have the G placed at that point.
It was an emotional 7 days. Benjamin was placed in Eli's old room, the zebra room. Looking out his door and across the unit, I could see the PICU room where Eli passed. He had Eli's nurses, docs, etc. The playroom was FULL of toys with Eli's donation stickers and Ben loved to search them all out and smile at Tiny's picture. Ben had some major panic moments, screaming that he couldn't breath and that he would die. It took a lot of time and an amazing team to keep him calm and work through this stay.
We got home late yesterday and we are working to settle back into normal life for a little while. Whatever that may be.
So it's Mito week. How do we feel? Broken. Awareness seems strange to us. We are painfully, brutally aware. We have been open and honest during our entire journey, doing everything we can to spread awareness. How do we bring more awareness? I can't answer that. I can't understand how Mito isn't something known by every person walking this world. There are children and adults struggling, fighting, dying EVERY single moment of every single day. There are families crumbling under the weight of Mito; emotionally, mentally, physically, socially, and financially.
There is NO cure. There are NO treatments. All we can do is manage symptoms the best we can, keep exposure to every day illness to a minimum, balance medications, attempt to maintain quality of life, scream to the heavens and the universe for help, and in those final moments all we can do is scream and cry and beg and plead and bargain with our very own life for theirs. Does that sound like something you want?? I didn't think so. So please please help us. Help us make Mito a word that EVERY ONE knows. Help us raise money, help us find a cure; before it's to late for someone YOU love; don't think this can't happen to you...because it CAN.