Wrapping up….Mito Fact A Day: Day 15-30

As sometimes happens, my direction this month changed a bit as it progressed, and at some point I got away from doing my “Fact A Day” on Facebook.  However, having already compiled the list, it made sense to finish this month with the rest of them.

15.  When Mitochondrial Disease comes into your life, everything changes.

16. Mitochondrial Disease is often an “invisible disease”.

            -Good Day: Patients look fine & healthy. They have more energy and appear rested.

            -Bad Day: Patients appear tired to significantly ill.

Repeated “bad days” often leads to decompensation & difficulty returning to baseline. ~mitoaction.org

17. Mitochondrial Disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened. ~mitoaction.org

18. The first case of mitochondrial disease was diagnosed in an adult in the 1960s and in the pediatric population in the 1980s. ~gmdaw.org

19.  Recent research results indicate that mitochondrial dysfunction is a large factor in degenerative disorders of aging like Diabetes, heart disease, Parkinson’s and Alzheimer’s.

20. Mitochondrial Disease is nearly as common as childhood cancer.

21. There is little federal or state funding to support Mitochondrial Disease.

22. Mitochondrial Disease is generally considered a progressive, degenerative disease.

23. The mortality rate can be as high as 50% per year for the most severe forms of the disease.

24. Simple things become monumental when you have Mito.

25. Medicine and machines become a regular part of daily life for many with Mito.

26. Many Mitochondrial Disease patients go undiagnosed and, as a result, the patients and their families suffer.

27. It is precisely the combination of “newness” and diagnostic difficulty that works against the recognition of Mitochondrial Disease and finding an effective cure.

28.  Every day is a marathon for the body of an individual with Mito.

29. The consequences of Mitochondrial Disease can be devastating to those afflicted and their families.

30. There is no cure……yet.

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The WishGRANTed Page  still needs your likes.  Miss Delaney is SO close to reaching her goal of 10,000 likes for this month….please share the link and help make it happen.  Just imagine, something as simple as liking this page means everyone on your friend list is made just a little more aware of this disease.

http://www.facebook.com/wishgrantedproject

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Just received this in my email this morning…..

Please share!!!!!


Support UMDF on The Pittsburgh Foundation's "Day of Giving" on October 4, 2011



You can help the United Mitochondrial Disease Foundation raise valuable matching funds from 
The Pittsburgh Foundation on Tuesday, October 4th when you make a credit card gift to UMDF through the www.pittsburghgives.org website.



The Pittsburgh Foundation has designated October 4th as a “Day of Giving” and for a 24-hour period will provide matching monies to gifts given through “PittsburghGives.” The website --     

www.pittsburghgives.org -- was developed by The Pittsburgh Foundation to help donors learn about the mission, programs, leadership and financial information of some 400 nonprofits like UMDF.



Please remember that the matching period is Tuesday October 4, 2011 from 
Midnight to 11:59:59 p.m.



You will have 24 hours to give! All credit card contributions on the “PittsburghGives” site during this period will receive a portion of the matching dollars.


All are welcome to make a gift; you do not have to be a Pittsburgh or Western Pennsylvania resident to participate. To help UMDF raise matching funds you must go to www.pittsburghgives.org www.pittsburghgives.org  -- follow the directions, and make your credit card donation of 
$25 or more to UMDF on that site.


Thank you for your continuing generosity.

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Thanks again for all that have helped us raise awareness this last month!!!  We love you and appreciate your efforts more than you can know.  Each action does make a difference!!!

New “Normals”

It occurred to me yesterday when we went to the dentist office for the girls to get their teeth cleaned, that while we have adjusted and accepted some new “normals” here at home….have adjusted to the looks when we are out in public….for those that love us, some forewarning of these “new normals” is in order.  Our poor dentist!!!

A few weeks back, Madison’s nausea returned with a vengeance.  It was constantly there, would escalate for periods of time, then go back to the constant level.  We have been here before…it’s miserable and we started seeing some of the spunk we’d finally gotten back into her start to slip away.  None of us can stand by and watch her go back to where she was before, so with some help, a plan was devised, and Madi signed off on it.

For now at least, Madison is on partial gut rest.  What that means is that she is eating mostly soft, easy to digest foods, with an occasional solid food thrown in (when it’s just too enticing to pass up), and otherwise she’s getting Boost (formula) and fluids through her g-tube to make up for what she’s missing.  This means she’s connected to her feeding pump most of the time in order to get in what she needs.  This means she has another piece of equipment she’s lugging around with her.

This, most importantly, means she is FEELING BETTER!!

I’ve suspected for some time, based on times when she wasn’t able to eat normal food for a few days, that digesting solid food took a ton of energy for her.  There was no question that when her system wasn’t having to work so hard, her overall energy was better.  But while we had discussed the possibility of trying it, particularly the last two years when she has been so low energy, SHE had to want to do it, and who really wants to give up eating??!!

The difference is, bitter sweetly, amazing.

I am still praying that tomorrow, or next week, or next month something will change.  Somehow her system will get better and she’ll be able to eat “normally” again.  In the meantime though, I am going to embrace this new normal like she has, and celebrate the fact that her spunk is returning. 

A little more on the “spunk returning” I have referenced.  It’s still day to day, and one good day can still sometimes mean a few days of being lower energy and tired, but overall, she’s tons better than where she was in early August.  This baseline I cursed last summer because it was so much lower than where we had been the summer before, well, I am THRILLED to see this time.  I marvel at how much better a period of time can look when things progress to a worse place.  Our girl is still not where she was, but she’s living, and smiling, and participating, and laughing….we can live in this new normal. 

So, if you see my girl sometime soon, I hope you can look past the feeding pump & tubing, the Oxygen tank and nasal canula, and the wheelchair (she may or may not be in), and just see that smile and that sparkle in her eyes.  The attachments are less than ideal, and certainly make a statement we’ve not experienced making before, but for what it’s all giving her…..her life back…..we are happy to have them along for the ride.

What Now?

As Mitochondrial Disease Awareness Week comes to a close, I am left with the very real question of, “What now?”.  I have to be honest and say there is a part of me that’s glad to know the overwhelming reminders will die down (see my last post), but logically know that one week is not enough.  One month isn’t either. 

It’s been amazing to see the efforts being made by so many this month to get the word out….hard, but amazing at the same time. 

The Wish GRANTed Project page on Facebook, started by a friends daughter is a mere 1858 fans away from their goal of 10,000 for this month.  Please visit and help them reach this amazing goal!!  I shared the link to the news piece about this awesome family before.

The regular informative posts on Facebook by so many, the green profile pics, green blogs, awareness ribbons online and in real life, green porch lights…..all of it gets people asking questions and spreads the word about this devastating disease.

But it just cannot end here.  This has to continue, on some level, every day. 

I am working on a few ideas and will share them as soon as I get them to congeal in my brain.

In the meantime, I leave you with the poignant Facebook status of a friend….

“As mitochondrial awareness week draws to an end today, I want to thank everyone for their support! Remember, you may not have to hear about it daily until this time next year, but there are TOO MANY that live it daily. This week alone FOUR mito warriors age 7 months, 4 years, 7 years, and 16 years lost their battle with mitochondrial disease. As many of us were shouting out about AWARENESS & CURE, four families were whispering heartbreaking goodbyes. Please continue to hope & pray for a cure. Thanks again for all your support!”