The family of a Wisconsin baby, Marcus Albers, announced that the boy passed away after he was awaiting a liver transplant at the Children’s Hospital in Milwaukee, according to reports.
Earlier this month, parents Whitney and Tony Albers said the boy had a few weeks to live without a liver donor, the report said. He suffered from a rare genetic disorder, Immunodeficiency 47.
Illustrating how rare the condition is, according to WSAZ, there are only 12 known cases of people with Immunodeficiency 47.
In a lengthy statement, his family said they were thankful for “the thousands of people who graciously volunteered to be a living donor for baby Marcus.”
“We want to especially thank the individual(s) that were screened and selected for transplant, but ultimately did not qualify. There was no disappointment from us. The donor’s health was just as important as Marcus’,” they added.
The parents then criticized the donor process.
“However, our disappointment does lie with the living donor screening process,” the parents continued, adding that there needs to be a “better system in place to handle the large volume of selfless people attempting to call and be screened.”
“This would have made it more likely that Marcus would have matched with multiple qualified living donors. Due to the limitations of this screening process, Marcus became too ill for surgery while waiting for matches,” they said.
Marcus, they said, “passed away peacefully in our arms with his caring doctors, loving nurses, and amazing staff by his side.”
The Froedtert & the Medical College of Wisconsin and Children’s Hospital of Wisconsin also released a statement on the boy’s passing.
The statement continued: “Thousands of individuals signed up to be evaluated as potential donors. Currently, there is no national database for living liver donors. Our transplant team spent countless hours following a rigorous process used by programs across the country to identify potential donors. As of January 2019, there are more than 113,000 candidates for transplant on the U.S. national waiting list. To add your name to the deceased donor registry list, please click here.”
Immunodeficiency 47
A cursory search of Immunodeficiency 47 turns up only a few results.“His symptoms included marked worsening dyspnea initially with activity but later with only minimal exertion. He had also noticed worsening cough, orthopnea, and ankle swelling. Based on his history of congestive heart failure, he was treated with diuretics with only mild improvements in symptoms. At presentation, dyspnea would develop with approximately 100 yards of walking.”
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