Dear Friends, Family, and kind readers:

On June 10, 2022, our family welcomed our beautiful daughter Ailani Pearl Troncoso. She was perfect in every way; however, at just 3 months old, she was hospitalized and diagnosed with Alagille syndrome.

Alagille syndrome is a very rare genetic disorder that affects primarily the liver, heart, and in some cases, kidneys. Some of the major side effects of this disease are a buildup of bile in the liver causing severe jaundice, itching, and xanthomas all over the body. In Ailani's case, she suffers day and night from irritable itching that won't go away. She scratches so much to the point that she is bleeding. She also has xanthomas all over her body, hands, feet, and face. It affects her so much to the point it hurts to walk and sit down. They are like walking on pebbles and often make her cry out in pain. She suffers from malnutrition and has to drink a special formula and be on a ton of vitamins and medications.

Recently, we have found out that she needs to undergo a heart procedure called interventional cardiac catheterization. In this procedure, a thin tube is inserted and guided to repair narrowed blood vessels in the heart. Also, due to her progressive liver disease, she is now having to receive a liver transplant.

Ailani is such a blessing. She is so sweet and funny. She loves to dance and play with her siblings. Our little girl has been through so much over the years with all the screenings, medication, labs, and hospitalizations. It breaks our heart to see her suffer through this horrible illness.

Our family has also suffered from this physically, emotionally, and financially. We are asking everyone who is willing, to please help us get through this.