WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, February 14, 2013

It Could Be so much WORSE. Quality vs HOPE

When we first heard about the depletion with Abby we got sucked in.. The Mito World full of babies dying, severely handicapped, the constant trips to the Dr. the therapies that get you no where... the tubies, the oxygen, the bracing, the food in a can, the supplements, the hunt for a Dr. who will be as anxious about Mito as the parent.. and boy after a child is diagnosed with Mito, suddenly it is a whirlwind of referrals looking for more bad news.. A specialist hears "Mito" and they worry- but should they treat a Mito kid different? Should they be more anxious to intervene? No. We have experienced with Abby what happens when your forehead is tattooed with Mito- they do treat you different. Things they might NEVER have taken seriously without the Mito diagnosis are suddenly life or death. Had I trusted the Drs. Abby would have a tube and god knows what else- and it would have been completely unnecessary just because she has a Mitochondrial Depletion. Frankly, I think too many interventions are occurring. I read a family who wrote the other day, "thank god we got the feeding tube because she suddenly got so much worse, if we had waited it really would have made her sick.." Could it be the feeding tube or the food is making her sick? The physical stress of a major hole in their gut? Or being in the hospital? We all know hospitals are land of the plague.. Or maybe it was the boat load of meds it took to get the tube in that made the child so much sicker so suddenly? Maybe the child really did need it.. but I have heard that a zillion times and wonder if it is only me that thinks there are some children out there that would benefit from fewer and less permanent interventions. If we believe we are disabled, we are disabled.

Nothing upsets me more then when I hear from a newly diagnosed child's family and the first thing they say is "The Dr. says there is no cure and we just have to focus on quality of life.".. Those words set a family up to NOT even try to keep looking.. to NOT even hope for improvements. To NOT even think that maybe it isn't Mito.. Surely everyone knows that out of ALL the kids diagnosed with Mito even the profoundly affected, very few have a gene identified- we don't know squat about Mito yet.

Looking back, we were affected by the "No cure" mentality. If there isn't any cure and you just have to manage then go for quality of life- I WHOLEHEARTEDLY Agree- Except there is HOPE. Not for all of us, but I am guessing that a lot of families would benefit from moving away from the no cure mentality to the there is HOPE and remission waiting mentality.

Before you start screaming, there are some profoundly affected children. The focus can only be quality of life. But they aren't as common and becoming rarer each day.

Again and again since starting this blog I have had family after family write saying they too were sucked in by the "no cure mentality". That at some point they woke up and realized that yes, for a few Mito patients there isn't any hope or any cure. Something or someone would give them hope. A story about a child who took a certain supplement and showed massive improvement, an adult that through diet and exercise got their life back.. or something deep inside themselves that REFUSED to accept the No cure statement.

I am simply inspired by many of the families I speak with- they roll their eyes at the no hope and move forward. They get second,third and fourth opinions. They try a million different diet plans.. they spend hours pouring over research. Heck, I know a few that have even gone back to College to learn more in order to help themselves or their children. From moving across the Country for more optimistic care or environments to walking away from the Mito World, families are finding ways to improve their health.

Each day as we watch Abby get a hair stronger, not only do I have hope I suspect that for a lot more then Abby there is a way at least to obtain remission.

What I keep in mind each day- They are finding new triggers daily that damage our Mitochondria. From malnutrition to a medication to another more curable disease, nothing is set in stone for Mito. Progression can be stopped for some. Improvements can occur for many.

With Cancer you can find a zillion Drs. with a zillion opinions on how to treat it- or what type of medical support would benefit you most. We have all read stories of a patient being told there is no hope but they go into full remission. Or the cancer patient who prays and changes their diet and goes in remission-

Why not for Mito? The way I see it at least for some types of Mitochondrial illnesses there is a lot more room for remission then there is with cancer.

At the end of the day, it has been proven- if you think you are going to die- you are more likely to die of cancer. Those patients that refused to even consider dying, they had a better survival rate.

We are so lucky. Abby is not one of the profoundly affected children. We are lucky because we are determined to heal Abby, not just accept stability- we don't sell ourselves short. We are lucky, we have created a wholesome and joyful life around her limitations. We are lucky that so many families have shared their determination and wisdom and HOPE with us. We are lucky that we have found Drs. who encourage us to keep going with Abby, who applaud our focus on nutrition, who applaud our willingness to take the hard way and screw the whole quality of life mentality! Who wants quality of life if your gut says you can be healed?


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