In 2017, my then 2 year old daughter was diagnosed with a rare disease called Tango2 disease. Since then, we have been searching for answers and treatments. We have learned so much about treasuring each moment with our daughter and have met so many other rare disease families that have touched our hearts. This blog is for all of those strangers and friends who have held out their hands and helped me along the way.
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When Strangers Become A Family
After eleven long days at Rady’s Children’s Hospital, my husband, my daughter, and
I slowly returned back to our normal lives.
We didn’t have any explanation yet for our visit and what had happened at the hospital. My daughter had laid in her hospital bed, non-responsive for days. Her heart rate was incredibly high and the doctors used words like cardio myopathy and high CK levels. The doctors warned us that she might never fully recover but slowly, she came back to us. We didn’t really
know what to tell our friends and family other than that the doctors suspected mitochondria
disease. We had never heard of it.
Thea in the hospital.
Finally, a month later, we sat in the neurologist’s office
and he told us that the genetic testing results that had been done in the hospital had come in and they had found
something that explained all of the strange symptoms we have been seeing for
over a year.It was called Tango2 Disease and he showed us the one medical paper that had been written about the
disease.He couldn’t tell us much about
it because it was rare and recently discovered. He mentioned the possibility of neurodegeneration and seizures but he said he could not be sure of any of this because there weren't enough kids with the disease to be sure of anything.I couldn’t
understand exactly what was happening here but I examined the doctor’s face
carefully for clues.If he was giving us devastating news, I thought he would look sad or nervous or scared and he seemed calm enough.
My husband and I drove home in separate cars.We had met at the appointment after
work. He took longer than me to get home because he had stoped to read the research article before driving home. When he came through the door, he was
crying.I was shocked.My husband is very even tempered and rarely
gets upset about anything.He couldn’t
get out more than, “This is not good,” and my first wave of fear hit like a ton of bricks.
I read and reread the paper about tango2 disease but it made
no sense to me.I couldn’t understand what
the bottom line was.What does this
mean?What is going to happen?Tyson and his sister spent hours on the phone
talking it over.His sister is a nurse
practitioner and was able to translate some of the medical jargon.After talking to her, he explained that
something wasn’t right in Thea’s body.Energy wasn’t being transferred properly and when she got sick or stressed
her body got over taxed and began to shut down.This is how we ended up in the hospital- she had caught two flu viruses at
once and her body could not keep up.
Next, we met with a geneticist.She told us that we had a one in four chance
of our future children also having tango2 disease.She also advised us to start a Facebook
group and make some connections with other families that have this
disease.“In cases like this, where the
disease is rare, its kind of up to the parents to advocate for their child,”
she said. According to her, there was one family from the research article that was willing to be contacted and she could put us in touch.
A week went by before I felt brave enough to arrange a time to call. I
was so nervous. What if I didn’t want to
hear how this child was doing? What if
it made everything worse? How could I talk to a stranger about this. It was all so personal.
Maricela on Sunday to talk about her son Sammy.She answered all of my prying questions about their experiences with Tango2 Disease.I found out that Sammy could read and write
with help from special ed classes, that
he was part of his high school football team, that he was 17 and happy and still acted like a teenager.I clung to every word.I had never felt such an instant connection
to a stranger. Suddenly, I was not alone. There was another one of us in the world. It was like a light in the darkness.
I mentioned the Facebook idea to her and she
said if I made a Facebook group, she would definitely join it. I didn't have much hope that there would be more than two of us but I made the group anyway. I followed everything that Sammy did
on Facebook eagerly.So did everyone
else in my family.We felt like we knew
Sammy and we were rooting for him.When Maricela posted that his first touchdown in his high school football
game had made the news we all cried and cheered.
Time went by and I received a request to join our small tango2 group.We were in shock.Someone had found us!This time it was a father living IN
ITALY.He had many questions for us and
was very interested in the vitamin cocktail Sammy and Thea were
talking that had been so effective in boosting their energy.He asked his doctor about it and after trying it, his son
showed some improvement.I felt the same
connection, the same feeling of light and hope.We could work together. Our combined experiences could be shared. Some puzzle pieces could be connected.
Slowly, more families joined us.Maricela even found a family randomly in a post
on another support group page. This mother brought two Tango2 families with her.
time, I met someone, I felt like I was holding out my hand in the darkness and
someone else was there to grab it and hold me up. There was an instant familiarity with these strangers. Quickly, they felt like friends. Just like with
Sammy, we watched the other children and learned about them and loved them and
hoped for them.When they were sick, we
discussed it over the dinner table and worried.
I met Melanie about seven months into the birth of the
tango2 website.She was from Germany and
we used google translate to talk to each other.Her daughter Louisa, three years old, was in a metabolic crisis like the
one Thea had been in all those months ago.Louisa could not walk anymore and the doctors weren’t sure if she would
walk again.Melanie wanted to know about the
energy supplements and wanted to get some advice from doctors who had more experience
with the disease.I was able to put her
in contact with a doctor who had been helping many of us.We checked in on each other after that sending texts and messages.She had become part of the tango2
Then, Melanie posted that Louisa had had another crisis
and had passed away suddenly.It brought me to my
knees.The pain, shock, and grief overwhelmed me. I couldn't breath correctly and I felt so afraid.I wanted all of it to go away.I wanted to go back to not knowing anything
about tango2 disease.It was all too
Melanie and Louisa
Other tango2 families began to post their love and
condolences to Melanie and I knew that we were all grieving. Their shock and pain echoed my own. Everyone was surrounding her with love. We can't take away Melanie's pain but I hope that we can tell her that she isn't alone.In some small unique way, even though we live in all parts of the world and don't speak the same languages, we have a certain understanding and a unique bond. I didn't expect to find such comfort reaching out to strangers but to me they are my tango2 family and I am so glad to have them with me on this rare journey.
The other day I was reading a book. It was a reflective book, one that I turn to when I need a little inspiration. I’ve read it many times before when suddenly I came across a passage that blew my socks off. It was so striking, I couldn’t believe that it had been sitting there in that book the whole time. How could I have missed this amazing passage? I’ve read this book so many times! It made me wonder if I had just skimmed over that part before and not really read it or if I had read it the whole time and was just now ready to begin to grasp that concept. When I first learned about Thea’s diagnosis, I remember the feeling of not being ready, of not being able to really hear the diagnosis. That part of me thought that after we got out of the hospital, things could just go back to the way they were before. Our daughter would be perfectly fine. The diagnosis lingered in the back of my mind, mysterious and hard to understand. The research article
When Thea was about 3 years old, her auntie sent her a pink potty in the mail. Thea loved the potty. She admired it from all angles and sat on it immediately. Shortly afterwards, one early Saturday morning, Thea woke up with a dry diaper. As soon as I took off the diaper, I set her on the potty just to see what would happen and… instant success. She peed right into the potty! I was so proud. I bragged about it to Thea’s preschool teacher as we arrived to school that morning. “Great!” She said. “Please send her to school in panties tomorrow, and we will work on it at school as well.” TOMORROW? I thought to myself. I wasn’t really sure how to potty train her tomorrow but I sent her to school in panties. Each day that week, she just peed in her panties. Over the weekend, I bought a LOT more panties and a book that some friends of ours had recommended about potty training that they had had success with. The book recommended that
Thea is usually a pretty happy kid…unless she is tired. When she gets tired, she gets stubborn. This stubbornness usually involves public humiliation for me. This summer, we went to the zoo. It was a warm day, so I rented a stroller, bringing water and snacks so that I could make sure that our day was fun and not overtaxing her body. At the end of the day, we returned the stroller to the zoo area. I suspected that Thea was getting tired and beginning to get to her “ unreasonable” stage. I knew this was the case when, turning around, I found her behind me arms crossed and glaring. “It’s time to walk like a big girl,” I told her. She continued to glare. Our friends had already reached the zoo exit by that time and were probably wondering where we were. I took a few deep breaths, hoping they weren’t in a hurry to leave. the "unreasonable stage" “Our friends are waiting,” I reminded her. “Carry me!!!” She demanded reaching up a