You join a Mito support group. You visit the UMDF or MitoAction. You get the news that you have Mito or your child. What are the first things you learn about Mito?
It is Progressive.
There is no cure.
Only treatments for the secondary issues.
Infections can kill.
Quality over quantity.
You end up grieving. Life as you know it, or as you hoped for your child is over. Every cold your child gets terrorizes you as you worry if this will cause regression.. Every story from another family where their child progresses leaves you sweating and unable to sleep.. unable to breath worrying that your child is next. Mito becomes the monster in the shadows waiting to snatch your child's life from you. It is honestly the worst I have been through as a parent.. I was never one to check on sleeping children just to make sure they were fine, but I found myself checking on a sleeping teen, just so I could be reassured that Mito monster wasn't lurking.
Along this journey you see some "normal" people Drs and Specialists. When you say you or your child has Mito you get an earful.
"you aren't sick enough"
"Who the heck diagnosed you with "THAT"??"
"No, you don't have that"
"rolling of the Dr. eye's"
"Let me refer you to someone to straighten this out"
So, you hit a point in the journey and wonder: " Do I have it, or Not?"
If I have it there is no cure, there is no treatment, it is progressive.....
If I don't have it that means I have something else that no one can figure out or treat and the unknown is again in play.
My question is, why can't you have Mito but find a cure? Why does Mito "have" to be progressive? Why not have Mito and shoot for quantity over quality?
I think most of the Mito data we know is based on the more "severe" patients with Mito.
Today though, so so many are being diagnosed with much milder symptoms. Daily I read a blog of yet another person with a depletion living much better then what the medical literature indicates as possible. Or Leigh's patients alive and living full lives in their 20's..
So you have Mito- so what? You can let a small amount of knowledge define you, or you can recognize that very little is known about Mito.
People who believe they are going to die from cancer,tend to die from cancer. Those who believe they will live, tend to be the ones more likely to have the better outcomes.
If you go to a cancer support group you are going to find those having tough days but you are also going to find folks who are focused on healing. Stage 4 liver cancer or pancreas cancer(labeled terminal) and they don't talk about comfort care and just "accepting their fate" at least not all of them, many of them are hopeful, focused on healing, optimistic. Fighting. Finding their own way. Getting second,third, and fourth opinions. Most Drs. aren't going to counsel a cancer patient to just "accept" their disease, heck no! They are going to encourage you to heal.
I bet though years ago before Drs. learned about treatments for cancer, they may have treated cancer patients like Mito patients.. no cure meant no hope.. Thankfully that has changed. It will change for Mito patients too.
As parents we can chose which way to deal with Mito. I wish I could trust any one Dr, that they knew what was best for Abby, but they don't and we don't trust just 1 or even 2(or even 3 or 4). When you have a diagnosis where a room full of Drs. cannot agree? You have to second guess every single bit of "advice" or a drs. "opinion". It is harder now for us, Abby is "grown.". We live very carefully to protect her health, to keep her "bucket" empty, to help her manage her spoons.. she now decides how to use her spoons or when it is worth it to fill her bucket. She is the one who plans her food to include all the nutrition she can fit in and actually digest.. she is the one who avoids any food that would put her GI health at risk. She is the one who decides which Drs are worth her energy and which one's aren't. I am grateful she too believes with care, with effort, with work there is hope. Her efforts inspire me. She lives with that biopsy finding and with the belief she will get better. So it can be done. After the diagnosis and the bad news it was very hard on her.. but she stepped back and decided she could live her way or change her life to fit some symptoms in a research paper- she gracefully picked her way. Hope. When she "believed" what she was told was her diagnosis, she did get worse. When she no longer believed in that diagnosis? She started stabilizing. The mind is a very powerful thing, we learned that we can never underestimate the power of the mind. You have to believe in Hope to have Hope.
Parenting a child who is clearly sick but undiagnosed bites. Believe me, we did it. School sucks- they like a nice tidy diagnosis. They have a hard time accepting your child cannot run laps but can be in the gifted program. If there are no meds, or no tubes they cannot be sick seems to be the frequent opinion. Families don't get it. Friends don't get it. Drs. worst of all, don't get it.
But, hands down, what being undiagnosed means is Hope. You are encouraged to work harder to feel better. You are encouraged to stay optimistic. To be good to your body. To eat better. To get better. Frustrating no doubt, when you are constantly told you cannot be sick because your labs are fine.. or Specialists act like you are wasting their time(they are getting paid) ..but at least no one is stealing your hope.
With Mito- well, you need to "accept" you aren't getting better. You need to "adapt". You need to work on Quality vs Quantity. You need to teach others there is no cure. You need to remember it is progressive. You need to remember you have other children who are normal and "do the best you can " for the sick one but make sure you keep a normal family. Which means you or your sick child need to adapt to the normal healthy family vs the healthy normal family adapting to the sick.
Why can't you have both? Why can't you have Mito and get better? Why can't you have Mito and heal? Why can't you have Mito and work hard recovering?
Wouldn't it be great if when you or your child were diagnosed you were met by " you have hope" " you can heal" "you can live fully" .. if you were met by the best case and not the worst case? Support groups full of stories of improvement vs progression? How about a printout that gives Mito Patients both hope and reality? Honestly, after awhile you start to feel like an abused puppy in an SPCA commercial- showing a sad,sorrowful, puppy or kitten that somehow manages to pull on our heart strings and opens our purses.. great for fundraising, but not so great for our self image.
Realistically, there are many who progress. But there are many who stay stable indefinitely.
When Abby was 16-18 months the Drs. thought she had IFSH - progressive muscular dystrophy- the infantile form with a pretty raw prognosis. I remember crying and being very upset.. totally normal. But Derek said, that is BS, "She will be fine". Every time I fretted about another delayed milestone he would say "don't worry, she will be fine.". We found a PT who also said " don't raise the disease, raise your daughter." She too said " She will be fine." She did get better. We finally found out she did not have that awful disease. She had a garden variety "undefined congenital myopathy."(This was before anyone besides a couple people even knew such a thing as Mito existed) For whatever reason be it the change in diet, moving across the Country, outgrowing it, she did get better. Derek was right, she was fine.
So, if it was the Mito the whole time? She got better and had Mito. That means she can get better again. That means others can get better.
You can have Mito and heal. You can have Mito and push for longevity. Life isn't easy for anyone. Why focus on comfort care when you can focus on a future? If you have Mito it is going to be harder, but why not make it harder working to heal instead making it hard waiting to die?
So be it.
I know there are some patients that are just too sick. Those patients break all our hearts. For some with Mito it is sadly progressive and for some terminal. But, for those that aren't? You have hope, just there isn't anyone talking about it.
You can chose.
Humans are pretty superior critters. :-) We have the ability overcome incredible odds, to change the odds, to learn, to heal, to have hope.