Notes from a Rare Disease Mom

The first time the doctor suggested surgery to straighten Thea’s eyes if patching didn’t work, I dismissed it.   I was sure the patching would work, and we would be fine.   But despite our efforts, her eye stayed shifted to the side and over time it grew worse.   In fact, both eyes had started to wander in opposite directions whenever she wasn't looking straight at us.   After three years of patching, the doctor again mentioned surgery.   I told her I would need to talk to our Nero-metabolic doctor.   I was sure that he would say no to a surgery.   She had a rare disease.   Anesthesia would be risky.   But to my surprise, my Neuro doctor also recommended the surgery.   He said it was not just a cosmetic surgery.   It could help with her balance, and she may have better vision in the future because of it.   I went ahead and scheduled the surgery with misgivings.   Tyson was even more uncomfortable.   We postponed...

Last weekend, my friend hosted a bunko party to raise funds for tango2 disease.   She spent hours creating the invitations, decorating her house, organizing beautiful plates of snacks, and gathering prizes for the participants.   There were purple and green endive leaves and garlicy bread with various dips.   There were cups lined up next to bowls with scoops to fill them with pretzels, popcorn, chocolate, honey peanuts, and tiny ginger cookies.   Though there were many different circles of friends mixed together, everyone chatted easily and cheered as the dice rolled.   The prizes at the end seemed suited exactly to the winner of each one.   It was truly the perfect party.   Everyone was so pleased with the food, the gifts, and the company.     As the night ended, I hugged my friend tightly and I thanked her, but I didn’t have the exact words to tell her how much this meant to me.      Tango2 bunco party! On Thursd...

Thea was home sick with a fever when I first learned about Sammy’s death.   I was making pumpkin pancakes hoping that extra carbs might give Thea a boost as her body fought the latest sickness going around.   I picked up my phone when it beeped and saw a text from my sister-in-law that said “OMG Sammy!   What happened?”   I ran to check our Facebook group with a growing sense of dread.   I scanned the posts until I found the announcement that Sammy had passed away in the night.   I was in shock.   Sammy was the first tango2 child that we found in the world.   He brought so much joy and hope to our family.   How could he be gone?   In a flash, I feel small and alone.   Our children are sick and there is nothing I can do about it.   I can’t stop it from happening.    Sammy Another tango2 mom and I message back and forth throughout the morning.   Her thoughts and texts bring me some comfort.   I...

When Thea first started preschool, I would walk out to the busy playground to pick her up after school.   Each time, instead of playing with the others, I would find Thea sitting alone quietly or snuggled next to a teacher.   This broke my heart a little bit each time though I understood why.   Thea had just learned to walk and when other kids bumped her, it threw her off balance and she would cry.   She couldn’t handle most of the playground equipment and she had just started speaking a few words and phrases.    Thea's First Day of School Once, during pick up, a boy from Thea’s class approached me and asked, “Is Thea is baby? She can’t talk.”   Not really knowing what to say, I responded, “No, she is the same age as you,” and walked on.     I told myself that the boy was just curious, but it still made me sad.   During mito awareness week, I gave Thea’s teachers a book that was kid friendly and explain...

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....

I first began to suspect something was different about Thea when I started to take her to daycare.   She just seemed less active, less aware, and more babyish than the other toddlers.   She wasn’t walking at 18 months.   I heard so many reassuring stories about kids walking late and it turning out fine but something still didn’t quite feel right.   I remember walking into daycare and one of the moms asking her daughter if she needed to go potty before she left.   I was shocked.   Thea was not even able to communicate with me let alone start potty training.   I asked the teacher about it and she said that the child was just an early learner.   I smiled at the teacher, thanked her, and sat in my car.   As soon as I closed the door, I began sobbing.   Around this time, Thea also began laying down with her ear to the floor.   My husband and I studied her as she lay there.   We thought maybe she had an ear inf...

About six years ago, before Thea was born, I started doing yoga regularly.   I had always been a runner but running all of the time was starting to hurt my knees and I needed an alternative.   I began going to a yoga studio near my home but all of those years of tightening my body through miles of running made stretching very difficult.   I was nowhere near touching my toes.   Fast forward to 2018, and I wish this was the part of the story where I tell you that now I am amazing in yoga class- that I can get into all kinds of crazy twisty positions but that’s not the case.   I’m really bad at yoga…still. Don’t get me wrong, I’ve made progress.   My toes are now reachable and I’m pretty proud of my headstand but yoga is still a struggle.   Why do I deal with this struggle?   Because I’ve never done anything that made my body and my mind feel so good.   I learned how to really relax in yoga class.   When I tried my first hot yoga class, ...