COTA for Pray for Paige

Our Story

Meet Paige! She is a spunky 6-year-old girl who lives in Maryland with her dad (Mike), mom (Lisa) and 2 sisters (Faith & Hannah). Paige is a sweet and loving child who truly radiates happiness and finds joy in even the littlest of things. She loves God, pizza, unicorns, princesses, riding horses, and pink.

In 2021, Paige was diagnosed with a very rare genetic disease called LRBA Deficiency (lipopolysaccharide-reactive and beige-like anchor protein). It is a genetic disorder that causes fatal autoimmune issues. LRBA is a disease that affects only a few hundred people worldwide.

LRBA is an autoimmune AND immune deficiency disease. People with LRBA are missing the “off-button” to their immune system.  This button tells our bodies to stop fighting a sickness. With LRBA the body doesn’t receive that message and starts attacking healthy parts of the body and organs.

LRBA has caused Paige to have multiple bouts of pneumonia, asthma, juvenile arthritis, Loose Anagen Syndrome (hair shaft defect), and severe GI issues.  Her doctors believe that because these symptoms have presented themselves at such an early age, the disease will likely be more severe for her. 

Fortunately, there is a possible cure for Paige’s disease. This April, she will receive a lifesaving bone marrow transplant to restore her immune system function. Her 100% donor match is her little sister, Hannah. Not only does Hannah not have LRBA, but she doesn’t even carry the gene; a 12.5% chance of both! Paige and her family’s faith in God continues to keep them hopeful for a successful outcome and cure.

While a bone marrow transplant can be a lifesaving cure, it comes with a great deal of medical care.  Paige will need to be continually monitored post-transplant for the remainder of her life, with frequent trips to Children’s Hospital of Philadelphia. For this reason, Paige and her family have partnered with COTA in preparation for a lifetime of ongoing transplant-related expenses.

Many have asked for ways to help; we ask that you please consider donating to do just that. 100% of the donations will benefit COTA in honor of Paige to assist with a lifetime of transplant related expenses. Any amount truly makes a difference and is greatly appreciated. If you are unable to contribute financially, your continued prayers are equally valued!

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.