Our Story

Bentley is three years old. He loves water and anything that lights up.  He especially loves his sister Lillie. He is always happy, even when he is not feeling good. When he does cry, he will always stop if you sing to him.

When Bentley was two days old his liver was determined to be failing, and his ammonia levels were extremely high. The hospital team of doctors worked to find out what was caused his levels to get so high.  Being the youngest baby in their hospital, the doctors had to create a dialysis catheter, small enough for Bentley, that would work. It is probable that the high ammonia levels in his little body may have caused some brain damage. He has not met the milestones that healthy children meet, and therefore will have lifetime special needs. 

Bentley was diagnosed with Propionic Academia. Propionic Acidemia is a rare  metabolic disorder. This disorder effects the liver, and is unable to process certain parts of proteins and fats properly. Abnormal levels of organic acids in the blood and urine and tissues can be toxic and can cause serious health problems. The doctors started him right away on the medication he needs and four different special powder formulas for nutrition. His liver cannot tolerate certain proteins and fats. His formula is given via g-tube because Bentley does not like the taste of it.  The doctors believe a liver transplant would give Bentley a life expectancy past 11 years. A new liver gives Bentley a chance to have a closer to normal life. It can help with brain development.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.