Henley Jordan Parsel was born on February 25, 2020, 4 days early, at the beginning of a pandemic and when you could not find toilet paper anywhere.  It was already a stressful year full of uncertainty and just when we felt we were finding our new normal is when we heard our 6-month-old daughter might have a very rare genetic disorder called Cystinosis.  Our world came crumbling down!

Since we knew how rare it was, we didn’t want to believe it could be true.  On October 6, 2020, her diagnosis was confirmed, and we began to mourn the life we once dreamed for our family and daughter.  The first few months were the most difficult and challenging time of our lives.  She was given all her food and medications through a G Tube.

Every hour an alarm went off in our house and phones, reminding us of a medication, feeding, or some type of therapy she needed.  We were having a hard time seeing the light at the end of the tunnel and didn’t know if it would ever get better.  As we started learning more about Cystinosis and Fanconi Syndrome, we knew how important it was to get her electrolytes and WCB stable.  We tried to remain positive and hopeful that she would one day eat again and that our daily routine would get easier. 

Within 4 months of Henley being hospitalized, she stopped throwing up and started to slowly show interest in solids and a bottle again.  When we received the news her WCB was in the normal range for the first time, we couldn’t be happier.  She is finally able to have more time playing, is crawling all over, standing, growing, and always happy! You would never even know she was sick!

When we look back to when this all started, we’ll never forget the day we were told it might be Cystinosis.  The Genetic Counselor came into our hospital room late at night and discussed the potential diagnosis.  Before he left, he gave us hope for a cure someday.  At the time, we were so overwhelmed that the word “someday” seemed so far away or would never happen.  After learning about the stem cell, gene therapy trials and how well the three patients are doing, “someday” is a lot closer than we could have ever imagined!  It gives us hope that those with cystinosis can be cured in the next few years and our daughter has the potential to live a long and healthy life.  The dreams we once had, can and will become a reality! 
Thank you to anyone who donates as you will not only be helping Henley but all the patients with Cystinosis find a cure and better treatments for the future!

The Parsel Family