The following day Natalia was airlifted to Children’s Hospital of Philadelphia (CHOP) because they found a blood clot in her kidneys. We were relieved that she was being sent to CHOP because we knew she would be in the best hands possible. She was immediately put on dialysis because of her renal failure and intubated as well. Miraculously, after a few weeks her kidneys recovered enough to be removed from the dialysis and the ventilator. Her kidneys did not recover fully but enough where things were looking hopeful. The Geneticists at CHOP treat children who have similar genetic disorders that have seen a lifespan exceeding 10 yrs of age with the ability to walk & talk (opposite of what we were told at the previous hospital).

She had a few good weeks where the doctors were considering taking her out of the NICU. Three weeks later we received the devastating news. After reviewing an Echocardiogram they diagnosed Natalia with PVS. They suggested a catheterization to balloon two out of the four main veins. After a successful procedure, Natalia was taken off the ventilator and was a candidate for Sirolimus to prevent her veins from shrinking further.

A couple of weeks later, Natalia had two seizures in my arms. She was then put on seizure medication. We were so hopeful for a miracle, that we were just thankful that she was able to tolerate all the medication. A few weeks later, the doctors informed us that Natalia's veins were shrinking again but it was worse than before. It was now three of her main veins that were being affected. She then had another catheterization. She never recovered the way we hoped for after her second catheterization. We lost our sweet Natalia one day shy of her turning 4 months.