When Karter was first born 14 months ago, his mother Breonna was overjoyed. But she quickly realized a series of upcoming obstacles when, at birth, Karter was diagnosed with Alagille syndrome, a rare genetic disorder which affects multiple organ systems throughout the body. As his health has slowly declined over the course of 2021, Breonna learned that Karter required both heart surgery to fix a number of defects, as well as a liver transplant. 

Now, according to Patch, a GoFundMe has been set up to assist the family with medical bills associated with his recent heart surgery; the bills associated with the liver transplant; and additional funds to help Breonna during this time. If you are interested in learning more about Karter’s story and donating, take a look at the GoFundMe.

Alagille Syndrome

JAG1 or NOTCH2 gene mutations cause Alagille syndrome, a rare genetic disorder which can affect the heart, skeleton, eyes, liver, and kidneys. Many children born with Alagille syndrome have liver disease, a reduced amount of bile ducts, or heart abnormalities which may impair blood flow from the heart into the lungs. Typically, symptoms appear within the first 3 months to 2 years of life. These include:

• Pruritus (severe itching)
• Failure to thrive
• Jaundice (yellowing of the skin and eyes)
• Cholestasis (bile flow blockage from the liver)
• Heart murmurs
• Backbone abnormalities
• Pale or loose stool, or dark urine
• Enlarged spleen
• Distinctive facial features (deeply-set eyes, pointed chin) 
• Posterior embryotoxon (white ring on the cornea)

Karter’s Story

This year, in March 2021, Karter’s health first started to decline. It was at this time that Breonna found out about his heart abnormalities, which had to be fixed before he could receive a liver transplant. Three months later, in June 2021, Karter had heart surgery to fix these defects. According to the GoFundMe page, this required a medical flight to California to meet with the team at the Lucile Packard Children’s Hospital. 

On August 10, 2021, Breonna shared that Karter is recovering from his heart surgery and should be able to receive a liver transplant in the next 6-12 months. He is currently at Johns Hopkins Children’s Hospital in Baltimore. 

In the meantime, Breonna shared that she is:

Looking for a donor of blood type O positive [so the hospital] will let Karter come home with me and his brother on the NG feeding tube until it is time for the transplant. If anyone is O positive and interested in saving this sweet baby’s life please reach out to me.

Karter’s family describes him as a loving, positive, and affectionate boy whose mom is continually advocating for his care. If you would like to help, you can:

• Share Karter’s story on social media using the hashtag #KARTERSTRONG
• Donate to the GoFundMe or through CashApp at $Karterstrong1
• Reach out to Breonna or Karter’s aunt via the GoFundMe page if you or someone you know is interested in donating O+ blood