Meet Dawson, the FIRST newborn in the United States to be diagnosed with Severe Combined Immunodeficiency (SCID) through the pilot program in Wisconsin that was supported by JMF. Dawson's mother credits Newborn Screening with saving his life as they never would have known he was sick before it was too late. Melissa wants other parents to know that although this diagnosis is scary, your child can live with the promise of many tomorrows.
What was it like to learn that Dawson's immunodeficiency diagnosis came from being the first baby tested for SCID in the United States?
I cannot begin to describe my emotions knowing that if we lived 200 miles in any direction from our house, Dawson most likely wouldn’t be here. Because we live in Wisconsin and because the Modell’s fought so hard for this Newborn Screening test to be added to the panel 17 years ago, Dawson is living the life of a normal high school junior 😊
How did your family feel when he was diagnosed? Had he shown any symptoms before the diagnosis?
He was 12 days old when we received the call from his pediatrician telling us that he had failed the SCID screening on the newborn panel. Besides his umbilical stump not falling off and some lethargy, he was a typical baby. I was devastated after the call from the pediatrician and searching the internet didn’t calm my fears. Every article started with… “Most babies born with SCID do not live to see their first birthday!” I was devastated!
What was it like growing up with SCID for Dawson?
Dawson spent 2 weeks at American Family Children’s Hospital in Madison to have surgery on his belly button and to undergo additional testing. Shortly after that stay we were sent to Children’s of Milwaukee where we found out Dawson had Leukocyte Adhesion Deficiency and that he would need a bone marrow transplant to survive. We spent about 6 months in the hospital.
How did Dawson’s diagnosis shape his life today?
Dawson is 16 years old and is a junior in high school. He has the best outlook on life and even stepped out of his comfort zone and gave a speech this year to the WFCA all-star football players about raising money for Children’s of Milwaukee!
What is the importance of newborn screening to you?
I credit the Newborn screening with saving Dawson’s life. We would’ve never even known he was sick before it was too late.
What hobbies/activities does Dawson enjoy these days?
Dawson is an active member of the Edgar Football, Basketball and Track & Field teams. Last year he got to lace up his football cleats along with his 5 first cousins and bring home a state championship title!!
What does the Jeffrey Modell Foundation mean to you? Do you have a favorite memory with JMF?
Meeting Vicki and Fred on Dawson’s transplant day and Jeffrey’s birthday was so special. The energy in the room was palpable. Spending time in New York and meeting so many other people in the PI world was life changing.
What would you like other children with PI/parents of children with PI to know?
I know this diagnosis is scary, but your child can live with the promise of many tomorrows because of this screening. Dawson is a very normal 16-year-old who plays video games with his 3 brothers, coaches flag football and enjoys the heck out of life.