What Alport Syndrome is Like for Little Kids

What Alport Syndrome is Like for Little Kids

I sat down to write about Alport Syndrome and Abby walked into the room to ask me a couple of questions. I suddenly had the idea to have her write about it instead. 

"Abby, What is it like having Alport Syndrome?"

Immediately her eyes widened, with a look of worry on her face. Every time I bring it up, she gets nervous. 

"Why Mom?" 

I can tell she doesn't want to talk about it. I tell her my idea and ask again.

"Well I have to take medicine every night. Sometimes the Doctors check my blood pressure. When I get older I will go deaf, that is why my family is learning sign language." 

I have to stop her and let her know that she will have hearing loss, but that hearing aides will help her to still hear. 

She starts again, "I run fast. Sometimes I beat boys in a race."

I am secretly happy that she didn't bring up that her kidneys will stop working properly. One less thing on her mind!

Abby holds her worries inside most of the time. She tells me on rare occasions that she talks to a friend at school about her condition. She doesn't talk to us about her fears very often. Her health problems started quite some time ago, almost 9 years ago. We had many years of unknown fears and tests and Doctor appointments. They definitely took their toll on her.

Things are easier now. It is easier knowing what they have. I don't have to seek out new Doctors frequently when we finally get to the end of the road of tests and ideas from sub par Doctors. 

Now we get to watch and wait, and live. For a moment, we get to enjoy this time, this healthy time. 

A couple of years ago, Quinn was really upset. He was insistent that he didn't want to be Quinn anymore. He wanted us to all call him Cody from now on. Cody was the name we debated calling him when I was pregnant with him. After some time with his distress, he finally told me that if he was Cody, then he wouldn't have the kidney problem anymore. He broke down and cried and begged me to call him Cody. 

It broke my heart that day. I wish we could remove diseases that easily.  

Part of having rare disease is more than just dealing with the actual sickness, but also dealing with the worry about the future. After we finally got the diagnosis, I would just stare at their pictures hanging up on the wall. I worried about their future, or lack of one. Questions would run through my head constantly. "Will they get to be married? Have kids? Go to college?" "WILL THEY BE HAPPY?"

It took me quite some time to stop asking those questions. Now I just live. We hope for the future and enjoy living right now.I am sure those questions will come back when their kidneys start failing. For right now, I want to enjoy this time. I don't want to worry their childhood away.

James 5:11

Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful (TG translation meaning Compassion), and of tender mercy.