when I met the mito moms

After leaving the hospital with Thea’s diagnosis looming on the horizon, our friends and family wanted to support us.  We didn’t know how to direct their support, until a friend mentioned that she knew someone who had a child with mitochondria disease and they did a walk each year to raise money for research.  We signed up for the walk and asked our friends and family to do the same.  Soon Team Thea had hundreds of walkers and donators all showing their support.  Words cannot express how much this lifted the burden of our fears and doubts.  Instead of dwelling on the unknown, we were cheering each time Team Thea got another donation, another walker, and another demonstration of love and support.  

 

Thea and a friend at the UCSD Mito Research Fund Walk

I met the woman who organized the walk in the weeks following the event. We immediately fell into conversation easily.  I found so much to share with her.  This is the way it has been when I’ve met other moms with rare disease children.  It’s like barriers are pushed aside and we jump right into an intimate friendship.  We already share the same pain, the same hope, the same fight, and the same recognition of the preciousness of time.  She has two daughters both with mitochondria disease.  They can’t walk up the steps leading to my home so we each take one and carry them into the house.  The girls smile warmly at me as I gather the smallest into my arms and though they can’t speak, they laugh and play with Thea’s tiny bunny dolls while I chat with their mother.  Just seeing her and her two adorable daughters made me feel a little stronger. 

Another mom introduced herself to me at the walk.  She told me that she also organized a dinner benefiting Dr. Naviaux’s research on mitochondrial diseases.  Her daughter had passed away from Leigh’s disease at age two.  After her passing, Dr. Naviaux stopped seeing patients and dedicated all of his time to doing research in his lab.  She agreed to partner with him to fund this research.  She told me how hard it was at first and how much easier it’s been now that the walk is supporting the research as well.  At one point, she had to make eighty thousand dollars at an event or Dr. Naviaux would have to shut down his projects.  She and her family made it happen and now it is the event’s 20th year anniversary. 

The night of the dinner, Dr. Naviaux stands at the podium with a letter that he wrote to the woman’s child.  In the letter, he tells the little girl how her mom and her family fought for her and for kids like her, how they invested hours of time and energy to help other kids and families.  He shares some of the publications (there are too many to list them all) that have been written and shared because of the funding and the new studies and medications available and in progress because of what their partnership has made possible. 

I am sitting at the table surrounded by friends and other moms with children who have mitochondria diseases, and I am holding back tears.  I am in awe of how much has been done before we joined this group or even knew it existed.  When your child first gets diagnosed with a rare disease, it feels like you’re driving in the darkness with nothing to light the road ahead.   No one can tell you what to expect or how to navigate this because the road hasn’t been traveled yet.  When we found out about this walk and this dinner benefit, suddenly there was a little bit of light.  I wanted these moms to understand the depth of our gratitude.  Though they were dealt a heavy blow, they stood up and started paving the road.  We’ve benefited so much from those families and doctors who rose up and started making their way in the dark.  

The "mito moms"

I think that this is the opportunity that we have when life throws us challenges that seem beyond us - to stand up and give everything we can.  I went to a rare disease conference once and the woman opened up the lectures with the story of a fire in the woods.  This is the one where all of the animals stand by in horror as the fire burns all around them.  All of them except the humming bird who begins to fill his beak with water and pours it on the fire.  When the other animals ask what he is doing he replies, “I’m doing everything that I can.” 

Watching these woman has inspired me to think about what talents and gifts I have that I can lend to this journey.  When the road ahead is dark and unknown, I don’t have the power to make the sun come out but I can shine a light.  I can do my small part in clearing the way ahead.  When I start to feel insignificant and to wonder if it will ever be enough, I think about that hummingbird and the families that have gone before me and find strength and comfort in doing everything I can.