For the many many families affected by Mitochondrial Disease, HOPE is all they have to hold on to.
A dear friend of mine named Allison who I met on this path to a diagnosis for Kendall has a daughter affected by a strain of mito that was originally thought to be MELAS (which meant she had encephalomyopathy, lactic adidosis, and stroke like symptoms), along with a mitochondrial depletion syndrome. Yeah. The bad one. The one Kendall was thought to have. We avoided it by a tweak of an A,T,C or G in the right place on a double helix strand of DNA. Miss B did not.
She is a beautiful little girl with an infectious smile. She fights a battle every day to maintain enough energy in all her critical systems to fight infections and function as normally as her body can. She is just one face of mitochondrial disease. As we have walked down this road with Kendall this past year, I have had opportunity to “meet” many other amazing children and their families who are also dealing with this heartbreaking diagnosis. As Allison puts it
“A week and a half ago, I feared that Brigid was nearing the end of her journey with us – she had a supposedly unsurvivable fever, her little heart was beating 4 times a second, she was bleeding from her nose, mouth and stomach. Her blood pressure barely registered. No parent should ever see anything like this, and it will stay with me until my last breath. We know Brigid will not outlive us, but we are not ready to let her go. We asked you to pray, send happy thoughts, whatever you could, and you stepped up. Thank you – thank you for thinking of Brigid, and of us. Thank you friends, and friends of friends, and so on – all who thought and prayed for Brigid. Thank you for your prayers, for your energy, for your support. Thank you for helping us get the new chair for Brigid – it is on its way. Above all thank you for reminding us we are not alone on this journey. Brigid is the embodiment of why we should never give up hope, and at the end of the day, hope is bigger than all of us.When you have a condition with no treatment and no cure, if you don`t have hope, you have nothing. We are selling the jewellery to help raise funds for MitoCanada and UMDF, the organizations that help give us hope, when we think we have lost it all.”
Allison and her friend have created some beautiful hand-crafted jewelry to help raise funds for UMDF/MitoCanada. I am personally honored to be able to purchase one of these sets because not only is it gorgeous jewelry – but the meaning behind it makes it worth so very much more than the amazingly low pricetag attached to it.
I remember when I first heard about mitochondrial disorders – back in February when the neurologist assessing Kendall in the hospital brought it up as a remote possibility based on how very sick Kendall was at that time. As soon as he left the room I of course was googling everything I could find on the topic. The UMDF website was an invaluable resource at that time, and is a great organization that is furthering research and education efforts about this disease and the havoc it wreaks on little ones and their families. What I learned about mito at that time was more than I think I wanted to know, as it is not a “curable” disease. And as we have continued to go down this path of looking for answers for Kendall, mito has continued to pop up over and over and over again. Knowing now that she has some form of disease affecting her mitochondria and their energy production or use in appropriate ways of course makes this cause very near and dear to my heart. I haven’t talked about it here a whole lot simply because it’s one of those concepts that when it is just a thought in your head, you can reshape it and make it what you want. You can carry something that is light as air around for a while. But the second you make those thoughts words, and speak them out loud, or commit them to paper that other people can read – they become an object. Something with weight and strength behind them. They are more real. And I don’t like real. I much prefer pretend. (guess karissa and i have a lot in common….)
So I don’t talk about it much because there isn’t much solid info to go on at this point. Right now we are hoping that Kendall’s mitochondrial dysfunction is a secondary process to the metabolic disorder she deals with. Getting yesterday’s news that she does not have a mitochondrial depletion was great and amazing – but it does not change that there is still some functional disease process here which falls under the “mito” umbrella. And I think I am just now learning to say that, accept it, be able to carry it around as a real object. It is something I will have to learn to adjust to still, probably for many years to come.
And the first step of that is for me to wear my mito hope necklace with pride.
And of course, with lots of HOPE.
Because that’s what we have always clung to, and will continue to cling to.
If you are looking for an awesome gift this holiday season – for yourself, a friend or maybe your mom or sister, please consider this beautiful jewelry for that gift! Wear it because it’s gorgeous, wear it because it supports a great organization, wear it because you want a reminder to pray for Kendall and Brigid and the thousands of other beautiful children affected by mito.
There are a few beautiful options for color choices.
I love this blue color. It is probably my favorite color ever.
and yet I am drawn to the “mito green” as well, just because it’s “our” color, our little magnetic flag on the back of the car, it represents the camaraderie of being united against something.
Apparently I like the black the most because it decided to be a bigger picture! But these are the brown and black options which I also love because they would just go with so many things. There are also gorgeous yellow, red, red and black, pink and a few other combo’s available.
If you would like to consider purchase a full set (necklace, bracelet and earrings) for just $35, please email me and I can get you the correct info. This money is not going to just our family, or Brigid’s family, or any other family in particular. All of the proceeds will be donated directly to the UMDF organization to allow them to continue providing supportive and research services to all families affected by mito.
I am sure I will have more great gift ideas coming up in future posts too, so stay tuned!
Have a great Thursday! I just found out that Ben is coming home today instead of tomorrow like i’ve thought all week – so that is a great surprise! But I better get movin’ on cleaning up the chaos of Hurricane Kaylen having hit hard this morning!