Amelia Rose Matthews is just a normal 14 year old girl.  She likes Harry Potter, even going so far as to call herself a Slytherin, she likes to draw and write stories.  She also likes school, but has missed a lot due to issues related with her transplant.  To look at her, she is normal.  You would never know that she has been dealing with a serious disease her whole life.

She is a brave girl who was tossed unceremoniously into the world of Kidney Failure at 11 months old.  She is full of heart, perseverance and a bit of cantankerousness.  She is one of the strongest people we know.

When she was 11 months old, she had a seizure and we rushed her to the hospital where it was finally determined that she was in renal failure.  She was put in the ICU and started on immediate dialysis to clean out her blood and balance her electrolytes.  That was the end of April 2007. We then spent all of May, all of June, 3 weeks of July and most of August in the hospital.  She had surgeries to remove her kidneys (fearing they would turn cancerous, and all indications are that they would have), and to place catheters and try to get her body ready for both Hemo and Peritoneal dialysis.

After more tests and a kidney biopsy, they have diagnosed her with Diffuse Mesangial Sclerosis, a very rare and very serious disease. It was caused by a spontaneous mutation of a certain gene in her DNA.

Eventually her first journey totaled about 16 weeks in the hospital.  Home dialysis ended in September of 2007 because it was not working.  She then spent 2 years on hemo-dialysis 4 times per week.  We spent 20-24 hours per week with her, up at the University of Utah Dialysis Center.

Finally, in May of 2009 a donor kidney was found for Amelia and she received her transplant a week before her 3rd birthday.  Her new kidney came from a wonderful lady named Carol that we are still in touch with.

It has now been 11 years and 2 months since the transplant.  Amelia has had more ups than downs, but still would end up in the hospital for unrelated issues.  Most of these issues kids would recover at home, but because of her suppressed immune system, she had to be watched closely. 

She has endured pain for months at a time, the loss of school and her friends, and uncertainty about the future.  Through all of this she has continued to put on a smile and keep on going.  When she was younger she lived in princess dresses because they made her feel better and made others happy.  Now, the dresses are gone but she still likes to make others happy by downplaying her own condition.  It is still odd to think that she has a chronic disease that will always be a part of her.

Now the time has come that her kidney is shutting down.  It has been a really good run at 11 years.  We have always known that she would need another transplant, the doctors initially said she would need 4 to 5 in her lifetime.  Knowing this, it is still a blow.  We are hoping that she will be able to have an easier time with this go around.  She is being followed by top notch nephrologists, and they are trying to keep her current kidney working until she can get another transplant without going through dialysis.  That is the purpose of this blog.  We want to chronicle all of this new part of her journey, much like we did in the past with CarePages.

As of April 12, 2021 Amelia received a new kidney! She didn’t end up needing dialysis. She felt crummy a lot, and got tired easily. She got to ride in a wheelchair when we were out and about. But now that will all change. As her body adjusts to the new kidney and the kidney adjusts her, she will get better and better at going out and being normal again. She is looking forward to just being a normal girl again.  

Thank you for visiting Amelia’s site and supporting her.  Thank you for being part of her journey.