Marshall Wilson was diagnosed with Krabbe Disease when he was 1 ½, just after the birth of his younger brother, Michael. Tragically, Marshall was not diagnosed until the disease was already too far progressed for him to benefit from the only available treatment, a cord blood transplant.
Since Krabbe is a genetic disorder, Michael was also tested for Krabbe and diagnosed early, before he was symptomatic. Michael underwent a transplant and is a healthy and active toddler. These two brothers have same disease—one is vibrant and healthy, the other is fighting the devastating effects of a terminal illness—all because the state where Marshall was born did not screen for Krabbe at birth.
The Wilson’s are fighting to change that by advocating for Krabbe Newborn Screening in their state.
What is Newborn Screening?
Newborn Screening is a state-based public health system that is essential for preventing the devastating consequences of a number of medical conditions not clinically recognizable at birth. All babies born in the U.S. receive newborn screening.
Just after birth, a few drops of blood are taken from a baby’s heel and placed on a card that is sent to the state’s newborn screening lab. The results are then sent to the baby’s pediatrician and the hospital where they were born. Newborn screening looks for serious developmental, genetic, and metabolic disorders that would not otherwise be detected.
For these diseases, early detection is essential so that they may be treated before irreversible consequences occur.
Newborn screening does not diagnose diseases, but identifies which babies need additional testing to confirm or rule out these diseases. Although these diseases are very rare, they are treatable if caught early.
The number of diseases a child is screened for depends on which state they are born in. Due to an inequity in each states newborn screening program, children are not being diagnosed for many of these diseases. For children with these diseases, the earlier the child is diagnosed, the better chance the child has to survive.
Please, we urge you, Take Action now and help save the lives of future children born with these devastating diseases. Thank you.
Copyright 2009 Hunter's Hope. All rights reserved.