Hi, my name is Keyshla, and I’m the proud mom of a warrior named Alexander.

When I was pregnant, we were so excited to see our baby on the anatomy scan, but that day changed everything. We found out that Alexander had a large hole in his heart. Later, after an amniocentesis, we learned he has a rare genetic condition called San Luis Valley Syndrome.

Alexander was born prematurely at 34 weeks and immediately taken to the NICU, where he spent his first month of life. At just one month old, he had his first open heart surgery. After that, he was transferred to the Cardiac Care Unit, where he would spend the next 17 months of his life, a total of approximately 510 days.

During those 17 months, Alexander endured two more open heart surgeries, one of which required him to be placed on ECMO, a life support machine, because his heart couldn’t keep going on its own. He’s had a GJ tube placed, a tracheostomy (he is oxygen dependent 24/7) and now lives with a permanent central line (which he gets TPN from because he has severe feeding intolerance). He has undergone countless procedures and continues to fight every single day.

Since then, Alexander has been diagnosed with seizures, hydrocephalus, and craniosynostosis (his skull is fusing too early). He also suffers from respiratory failure, pulmonary hypertension, and his lungs have collapsed multiple times.

In November 2024, we finally brought Alexander home for the very first time. It felt like a miracle and we couldn’t believe it was real. We thought maybe things would finally get better.

But since coming home, we’ve been readmitted to the hospital every single month, sometimes multiple times a month. Alexander has had severe seizure episodes that cause his oxygen levels and heart rate to drop dangerously low, sometimes causing him to lose consciousness.

This journey has been unimaginably hard, emotionally, physically, and financially. We are asking for help so we can stay by his side.

Thank you for reading and for standing beside us as we continue fighting for Alexander’s life.

With love,

Keyshla & Family