Lexi, the most precious gift ever

When she was 14 months old she had strep throat and ran a 103 fever. After a few weeks it seemed like she was just not getting better. She ended up in the hospital for a couple of months, doctors trying to figure out what was wrong. Instead of our little girl continuing to walk, talk, run like she should have, she was going backwards.

After a year we were sent to a doctor in Maryland, (Dr. Raphael Schiffman), at the National Institute of Health. Before we went to Maryland though Lexi had gone to the dentist and had to have some dental work done in the hospital. During the procedure she actually aspirated some water into her lungs, but we didn’t know this until later. She started acting like she was getting a cold before Maryland but her Neurologist said she would be fine to still go. She ended up in the ICU in Maryland, them flying our family up there to tell our girl goodbye. Remarkably she made it through and we took her home, but not without her condition declining even more. The doctors explaining that fever and sickness can make her condition worse. All we could do now was pray and ask God to help us all get through this.

The next 4 or 5 years would be the toughest so far for her and us, Learning about the rare condition that our daughter had and how she and us were going to make it through this. Lexi has been in and out of the hospital more times than I can remember and a few times the doctors told us she wasn’t going to make it, but each time she proved them wrong. The hardest thing for her has been Urinary Tract infections, last year she was in the hospital 13 times just for that.

This year has been a really good year for her, she has had a few UTI’s but nothing like last year. Through all Lexi has gone through she always seems to keep that beautiful smile of hers.

I’m not sure why God chose us to raise such a special little girl, and yes there are times when I wonder what it would have been like if she had not been born with this awful disease but I do know that she has made a lot of us stronger than we ever have been and has brought so much joy to so many lives.

Lexi is a very strong willed little girl, the doctors told us she wouldn’t live past three. She’s 13 !! I thank God everyday that we are blessed another day with our little angel.

Update: Lexi, will be 18 in January 2021, she has done remarkably well for several years now, other than a few uti’s. She continues to bless us all with her beautiful smile, and her very own unique personality. She is supposed to be a senior this year but special needs children don’t get to graduate when they are 18 and a senior. She will continue her schooling until she is 21, not sure what my feelings are about that yet.

Do what you can to help spread the word that funding, research and a cure is needed.

Lexi gained angel wings April 24, 2021

Your donations will fund the science that saves the lives of children. Even if it’s a small amount, please consider donating.

Written by Lexi’s mom.