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.
I contacted 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. 

Sammy playing football.

Sammy's First Touchdown on the News!
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.  
Each 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 family. 
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 much. 

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.  


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