Layla

2016 Just for J 5K North Texas Recipient

This is Layla, she is 7 years old. She suffers from Pustular Psoriasis, Psoriatic Arthritis, severe Eczema, and Congestive Heart Failure. The combination of these three skin conditions in a child is incredibly rare and the symptoms are often extremely painful. She was diagnosed as an infant, and over the past 7 years she has been through many medical trials and experimental medications, many of which have caused more harm than good, but at the time we didn't know what else to do. We had some good experiences with certain medication that were able to give her a great quality of life for a little while.

Unfortunately those medications have all stopped working. In the past 2 months we have tried the final medication known to help with these conditions and she has experienced major negative side effects. She has had 2 emergency surgeries to stabilize the effects. She was diagnosed with a blood infection of MRSA and the treatment for it is 14 days of IV antibiotics and on day 10 the medicine caused temporary damage to her kidneys and liver causing a toxic amount of swelling. This then caused her lungs to fill with fluid causing congestive heart failure. She was then placed on life support for 4 days. Thankfully, she defied all odds and pushed through. She woke up and started breathing on her own and they were able to take her off the ventilator on day 5.

We have run out of conventional medical option and it is time we try unconventional methods that are extremely costly. However there is a clinical trial that she can participate in and it is her last option for a better quality of life!

Our family will use the proceeds from Just for J to help with relocation costs of moving our whole family to another state for treatment in hopes to help Layla! -2016

On March 10th, 2018, after 10 years of fighting Layla went to be with the Lord.  We are so blessed to have known her and will forever remember her sweet smile and fun dance moves! 

Follow For the Love of Layla