Over the past year, I have felt increasingly led to play a role in bringing more awareness to this issue. It is an awkward thing to put yourself out there and open you and your family to others, but it is worth it to spread the word if brings more attention and awareness. I posted a link on Facebook early this week about a story CNN covered about a young boy who suffers from Mitochondrial Disease and his family. His mom and dad told his story to bring awareness. Unfortunately, it also brought out some of the worst in people. I finally had to stop reading the comments that people wrote. I need to retain my faith in humanity. I am so proud of the Martins and there willingness to be vulnerable in sharing their story.
Maybe you know someone who has had a random mix of the symptoms I blogged about in Pt. 1 and now realize there may be a bigger issue going on within their body. Maybe you know someone whose authenticity you doubted when they talk of not feeling well and struggling physically and you now won't be so quick to dismiss them as dramatic or some kind of hypochondriac. Maybe you will feel compelled to tell others and spread the word about this condition, or support the cause in prayer or some other means. I just want people to know about it. I want to shorten the diagnosis time for patients. I want the appropriate testing and treatment provided for patients without them having to fight the battle, and also travel long distances to get it. I want patients to be able to have their emergency situations met with the proper and expeditious care required, instead of having to defend or fight to get it. I want more research. I want a cure.
I knew that I needed to take an active role as an advocate who raises awareness for Mitochondrial issues when...
- Doctor after doctor could not diagnose my daughter, and some implied my daughter was a hypochondriac and/or I was a some kind of Munchausen's mom. And...I realized this experience was not unique to me.
- I learned that many/most of these kids struggle in silence with no diagnosis for years because of ignorance.
- Natalie's primary doctor asked me, a layperson, to come and speak to 40 doctors about Natalie's condition, her background, our journey, her symptoms, and diagnosis to educate them because she is the only diagnosed case in the region (that is not to say there are not others that fall into #1) and apparently, I had the most knowledge.
- I realized this is a genetic issue, one that runs down the matrilineal line. People need to be aware of this. I learned that many of the random medical things that I have had in my life are related to this genetic root cause including my own issue with cyclic vomiting that occurs in five week episodes. I learned that some of my son's issues were tied to all of this. It is Natalie's manifestations are just far worse than ours. Her children, provided she has them, are much more likely to have issues. Many families end up having multiple children with Mito issues.
- Four out of the five paramedics who came to my door to transport Natalie did not know what Mitochondrial Disease or Cyclic Vomiting were. The fifth only knew because he looked it up on the iPad on his way over.
- I had to fight with the intake person in the ER for the umpteenth time when we arrived at the hospital because she didn't understand why my daughter's need for an IV was urgent. (I forgot her ER protocol letter and apparently looking her history up is too difficult).
- I discovered I actually had to have an ER letter in order to get appropriate treatment for my daughter because no one is knowledgeable about her condition.
- On day 7 of her last hospital visit, it was clear that the doctors at the hospital really had no clue what steps to take to help her and the pediatric intensivist told me he had no real knowledge about her particular condition so he would have to find someone to defer to (but would not contact her specialist because he is not formally approved by Sutter as her doc).
- I realized the hospital resident was spending so much time with me asking me questions not because he was trying to develop a plan, but instead was trying to learn from us.
- I continued to have constant battles with both our medical group and insurance company to get the coverage Natalie needs because they do not understand her condition. Explaining it every time I call to argue/appeal is quite the event and frankly, it shouldn't be a battle.
- I read more and more about Mitochondrial Disease and realized how tragic some of the stories really are, What Natalie goes through is horrible, but others have it so much worse, Kids die from this and many kids who are alive aren't really living.
- I began to connect with others on social networking and realized how desperate people are to find the proper doctors and effective treatments for their children - and what a challenge this currently is.
- It became more than clear that those of us with Mito kids are really currently each other's best resource. We are all in different parts of our journey and need each other. I "met" a mom who was in the quest to find an appropriate doctor and treatment for her son, Christopher, who has Cystic Fibrosis and Cyclic Vomiting Syndrome and realized she was in Northern CA. I was able to share our experiences with Dr. Boles and information about the "mito cocktail" Natalie is on. We were able to compare notes on doctors we have seen/see locally as many are the same. We support each other with tips, knowledge, and prayers as symptoms change and episodes arise. We have a shared understanding of what this is like. I swap information with individuals all the time because in this battle, awareness and knowledge is everything. Without it, your child pays the price.
- I realized that many medical issues of today are proving more and more to be tied to mitochondrial dysfunctions in the human body. What if by raising awareness and learnign more about mitochondrial issues, we are able to eradicate or lessen the instances of so many random illnesses and challenges people face today. It would be amazing.
- I felt that divine calling to speak, and give a voice to this little known disease that impacts so many.
The 5k will be taking place on February 17th in Sacramento. There will also be a 1/2 marathon in Pasadena as well as an event in Florida, for CureMito on this same day. How cool is that?!?
I have to be honest. This whole 5K thing is all new to me. I am in way over my head:). I am not worried, however, I know it is what I am called to do. I can't wait. I am so blessed to have friends who are committed to working beside me to pull it off as we work in partnership with CureMito. If you have any tips for sponsors, locations, or any other aspects of the race, email me at email@example.com.
I leave you with this...