It is with great pride and sincerity that I ask all members, families and friends of MitoAction to please congratulate and recognize the following mitochondrial disease patients, moms, care providers and supporters of MitoAction who so quietly and humbly volunteered 1000’s of hours so that Mito Families, could have a place to go to when they wanted to obtain more information about Mitochondrial Disease and educating their children and loved ones.
This new resource offered from our main site at mitoaction.org, located under the educate tab, will give everyone information and options as to how they can advocate and educate themselves and all people who will be a part of their child’s educational experiences. Starting from birth to when they first attend school /home school and continue to travel through their high school years and beyond.
Thank you, Anne, Lauren, Laura, Cher, Cristy, Kristin, Jean, Jean, Kathy, Kim, Matt, Maggie, Mark, Mary Beth, Patty, Rod, Tracy, Jimmy, Harry, Olivia, and Wendy! If by chance I have not recognized someone PLEASE forgive me, as the outpouring of support was often more than I could handle. We all worked diligently to make this new section about educating our children available. There were those people, who shared a thought or two, or an hour of one day, and could not give more time but please know that your one minute of one day has made this possible as well.
The generous people mentioned above put their heart, sweat and yes tears into establishing the “education” tab on our main web site for MitoAction. The amount of time, effort and cooperation between all of these volunteers has enabled MitoAction to offer a concise “stepping off point”, for parents, students, caretakers, teachers and physicians to help families develop a strong educational foundation so that their child, student or patients can navigate the pathways of educating our children with Mitochondrial Disease.
Eighteen years ago, with the birth of our first child, a son, than the addition of our daughter 4 years later added our family tree was growing. We, as all families started down the road offering and supporting our children as their learning needs, styles and medical complications were appearing daily.
After nine years of searching for a diagnosis for our daughter, we received it! Mitochondrial Disease, our response “Mito what”? From that moment on our daughter’s educational needs and physical care changed. As we had been dealing with multiple undiagnosed medical issues for 9 years, as well as educational obstacles, we somehow managed to advocate for both her educational and medical needs somewhat, but it was a trying time for all of us as we attempted to educate ourselves and her teachers.
There were school meetings after school meetings, explanations after explanations of both educational and medical needs. I remember the evening that my husband and I looked at one another and said, where do we go, and what do we need to know? What we are doing isn’t working. People do not understand this disease and its complexities. It was at that moment we decided we needed to educate ourselves better as to what our children’s rights were legally as well as educationally and medically. We took on new titles and became educational and medical advocates. So began our journey.
We researched, read, categorized, attended seminars, spoke to educators, attorney’s and physicians realizing the one common factor that was hindering us in communicating and obtaining educational supports for both our kids was that no one knew what Mitochondrial Disease was. As a parent, I remember thinking; do you think we made this up? Do you think we just threw a diagnosis on a paper and said give us the accommodations and modifications we want because we said so! That was the “mother bear” in me. That was the mom who couldn’t fathom that although the disease was rare, that because it had a name, we were going to be all set and all those people involved in our children’s lives would get it now. Well, it was a nice thought, but not realistic at all.
It wasn’t until I met an anonymous woman during one of our daughter’s hospital stays that changed our worlds forever! We were sharing a room with a very ill little boy, and our daughter was screaming at the top of her lungs, so I peeked around the hanging curtain that was separating our beds and whispered, “I am so sorry that my daughter is keeping your son awake, I know he needs his sleep.” She rose to her feet in what appeared to me be an angry motion and moved quickly towards me. As she stood two inches from my face, this woman I never knew, grabbed my shoulders and said, “Don’t ever apologize for your daughter’s pain, her pain is just as bad as my son’s, all children hurt the same.” She went on to say, “promise me you will never apologize for her pain or heartache again, because you are her only advocate, her lifeline, her voice when she can’t speak. You’re her mother, teacher, nurse, doctor and above all her only advocate”. I stood for a moment, as she disappeared back behind the curtain and truly absorbed through every ounce of my being what she had said to me. I repeated it silently, “I needed to be my daughter’s advocate.” We went home, and sadly to say I never did see that wonderful woman again.
Once home, we made the active choice to change how we were going to approach people who were going to be in our children’s lives and ours as well. Instead of demanding that someone listen to us, we decided to educate them. Instead of insisting that school personnel see things from our perspective, we would educate them about the disease. Instead of screaming and saying but the law says, etcetera, we showed them the law, and educated them. We became advocates and educators, instead of dictators and screamers. We shifted our frustrations to motivations, and decided that where there is a will, there is definitely a way. Has it been easy, no. Has it been life altering, yes. Would I change one minute of one day, no way! We had a plan, a new agenda and outlook. Then out of nowhere out next detour hit; our son was diagnosed with late onset Mitochondrial Disease in the summer of his sophomore year at 16 ½ years of age. Again, we were advocating, educating and supporting him.
The difference this time, was that we had put into place a strong educational foundation for our daughter and having done that we were able to obtain for him what we had struggled for years to get with her, within a week. One week! So with my heart and soul, my passions for educating and advocating now for two children was in full gear.
It is amazing to see the culmination of 18 years of research, commitment and dedication of many others and myself come to fruition with the educational aspect of MitoAction’s website. There have been so many doctors and teachers who have crossed my path and taught me that doctors are not Gods, although we expect them to be, and that in order for teachers to educate our children they need to understand the educational and medical complexities which occur with their mito students. As parents we need to realize that these professionals put forth tremendous efforts to ensure the medical and educational successes of our children. It is important for us as parents to rememeber that these doctors and teachers have lives, families, and real issues too.
We all have to remember that we can work as a team to accomplish great things! This educational section of the website is a “great thing”. It may not be perfect, it will have errors, but it was done with passion, concern and from the best intentions of all of the volunteers listed above. With that said, please let us know if there is something missing, or if you feel something isn’t quite worded correctly. We can also add to this site easily, if you feel that we should be discussing something that is currently not present. It was and is our goal to educate, advocate, support and incorporate all that we can to help our Mito affected families. Truly, thank you just isn’t enough, but it is heartfelt and I feel privileged for having been a part of such a wonderful resource for our Mito patients and families.
As for my family, we ALL continue to educate, advocate, and support our family with the hope that what we have learned can be shared with others. Our son is graduating from public high school this year and attending college in the fall, our daughter will be a freshman at our local high school. For every moment of every day, our children live with the diagnosis and health complications of Mitochondrial Disease. Please take the time to educate, advocate and support your children, as they learn to manage and educate both their medical and educational challenges so that they can learn to live full lives with the right tools and supports. Together we can ALL do it!