Harley Nova

Harley is a spunky 19-month-old little girl with a huge light to shine on everyone. She is very kind with lots of love & cuddles to give while always smiling & laughing. She loves to be outdoors playing with her dogs, and the trees always put a smile on her face as she loves anything and everything outdoors! Daddy's dirt bike has always been a peak of interest. She smiles so big and gets beyond excited whenever he starts that yz250. She even loves to go on rides! Music is another thing Harley Nova enjoys beyond measure. There would be no car rides if there weren't tunes going for her to hear! Harley met most of her milestones. She was a little bit slower to get crawling down and was just starting to hold on to things and walk all over. She then started to experience brief moments of ataxia where she would fall on the ground and get so frustrated that she couldn't get up or move the way she wanted. This happened a few times before Harley went into her metabolic crisis. We were out for a great family day on the utv trails, something we love to do together! Harley was feeling great that day with no signs of discomfort. She didn't even seem to be having a hard time with teething. About an hour after dinner, we put Harley in her car seat to get ready to head out for the night. Thirty minutes later Harley awoke and had thrown up a tiny bit. I rushed her out of her car seat to assess the situation at hand. I got her water and cuddled her to help her feel better. That was the last time I saw Harley Nova awake. Once we got home, we put her down to bed. We had had a long day so when she didn't awake right away that wasn't unusual. The next morning, we tried to awaken Harley and she would not wake up. We rushed her to the Emergency room where they did lots of tests, drilled into her shins for fluids, and got her ready to be life flighted to Seattle Children's Hospital. For about 2 weeks we didn't know what was wrong with Harley. They believed she ingested something because her lactic acid was so high and sugars had dropped so much. With her being with us all day in the car, there was a very slim chance that she had gotten into anything! They took lots of tests and at this point everything came back normal. They then decided to run the gene sequencing tests. A few weeks later we learned that Harley was diagnosed with the very rare, life-threating disease called TANGO2. This was a huge shock for us but in this case, we felt an answer was better than none. We are still receiving treatment for altered mental status, increased pressure in the brain and to optimize seizure medication. We are on the path to go home and very optimistic with the strides she has been showing us! Our hope as a family is to just keep moving forward and live the best quality of life possible.