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Lola story

Born full term and seemingly healthy Lola’s life changed at 16 days old. Lola was airlifted to a children’s hospital where she was diagnosed with left ventricle cardiomiopathy, a coarttion of her aorta and 1P36 deletion syndrome. At the time of her admission her heart was functioning at only 20%. She was listed for transplant and received her heart transplant on September 4th 2018.

After spending over 10 months in the cardiac icu she was finally released from the hospital. Following this discharge she was placed on oxygen and is bipap dependent. We needed to relocate to a local apartment as lola is not stabile enough for us to return home due to complex medical issues.

In addition she has stage 2 kidney disease, horners syndrome, high blood pressure, seizures and over 25 diagnosed issues. Lola has battled PTLD for the past 2 years and receives ivig every 3 weeks. She is non verbal, doesnt walk, and one oxygen 24 hours a day. We have just learned she has congenital central hyperventilation syndrome or CCHS which is which is an extremely rare disease.