What Alport Syndrome is Like for Little Kids 15


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.

 

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. 

 

For their full story, click HERE.

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15 thoughts on “What Alport Syndrome is Like for Little Kids

  • Randy McKee

    Your children are very fortunate to have you and Kevin as parents! The lord gave them challenges but he knew they could handle and grow from these challenges with you two as their parents. You all are amazing! I love you all so very much!

  • Kali

    So incredibly beautiful. I loved it. Also I feel for my sweet Abby and Quinn. I think the fear of the future and your body failing and dealing with the pain is definitely the hardest part. Thanks for sharing. Kali

  • Heather

    You made me cry; it’s heartbreaking to hear of the daily burden this condition has put on your children! I just love you and your family. You are a TRUE example of love and happiness in ALL situations. I truly admire you as a mother, you are so patient and loving to your children. Thank you for sharing something so personal. We love you guys!

  • Brian

    As a child, I grew up with Alport’s and my parents and doctors did not withhold any information from me, so I knew what was coming and that knowledge transformed me to be a person who learned to redeem the time and to persevere. Yes, there are many difficult days and my parents loved and enabled me through them. My kidneys shut down at age 26. I was transplanted at age 29. Since then, I have earned a Master’s Degree and Doctorate. I am a happy 46 year old married man with 4 healthy children who teaches at a small college. All that to say, the illness and kidney’s ceasing to work are a part of the journey, but it is only one chapter in the book of life. I was able to turn the page to a new chapter in life and so will these young ones with their loving and supportive parents encouraging them to not settle in life. Endure the hardships and rejoice in the victories…and along the way life will take cares of itself. The Lord has a future and a hope for us all.

    • Natali Post author

      Thank You for this. That chapter seems like the most daunting to face, right now. Were you scared as a child knowing what was coming? We’ve told our kids but I don’t think they grasp what it means yet. Your story gives me great hope. What form of Alport do you have?

      • Brian

        Hi Natali, Yes I was scared and it was like this rainy cloud that followed me everywhere. I couldn’t do sports like other kids so i embraced the books. No i couldn’t grasp the full impact of what was going to happen to me. Nothing really can prepare a person for dialysis and transplantation. But i encourage people with Alport’s to learn as much as they can so right decisions can be made in the future. Because I learned about my disease early on, I felt more in control of my decisions even when i had no control over what was happening to me. Also, i grew up in a religious home and I learned to trust God with my life and I feel this second half of my life has been more blessed than the first half. I am X-linked, so i do suffer from hearing loss as well, but nothing hearing aids don’t take care of. Thanks for asking.

  • Joella Brown

    Natali, Thanks so much for sharing about your family. You are a strong woman and I know with the help of Heavenly Father you will be able to handle taking of your beautiful children.
    Hugs, Joella Brown

  • Amanda

    “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jer 29:11. That’s what I thought of when you said you wondered about your children’s future, or lack of one. They definitely won’t lack one according to God’s word. But still my heart breaks for you and your family. Why can’t diseases just wait to show up til we’re adults? Huh? Since you know that their kidneys will fail one day, do you get to put them on a transplant list now and shorten the waiting when it happens?

    • Natali Post author

      Thank You for your comments and sharing HOPE! I find comfort from reading the scriptures. Unfortunately we have to wait to go on the list when their kidneys get down to like 15% functioning before they do that. They want them to last in their kidneys as long as possible and save the space for others who can’t survive without a new kidney.

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