By VICTORIA MACCHI
Wednesday, January 16, 2008
The second-grade Corkscrew Elementary student hasn’t spent time with his mother like he used to since Adam, now 9 months old, was diagnosed in August with Severe Combined Immunodeficiency.
The once-healthy baby boy needs to see doctors on the east coast two to three times a week to manage the condition that makes him extremely susceptible to infectious diseases.
“Adam is doing good overall. We just take it one day at a time,” Amy said from her car after two doctors’ visits.
The pair leaves for Miami at 5 a.m. on appointment days.
“Adam sleeps all the way there and back,” describes the mother of two and Collier County social worker. “He’s so happy even though we poke and prod him all the time.”
From August to November, Adam was confined to Jackson Memorial Hospital; now he is back in Naples, and the Saadas spent his first holidays – in between doctors’ visits – as a family.
“It was wonderful to be home for Christmas,” Amy Saada said.
Juggling medical trips, work, and the two boys’ schedules, “you just want to do something together as a family.”
Since Adam received a bone marrow transplant from his mother in September to help him develop an immune system, his T-cell count increased from zero to 500; the goal is 4,000 to 5,000.
“His cell counts are what’s expected. It’s just going to be slow-going…,” Amy Saada said.
Although he hasn’t had a severe rejection of the graft, “we just keep running into obstacles. He has an enlarged liver. (Then) it was vomiting,” his mother explained.
He is having eye trouble as well.
One cause doctors are monitoring is graft vs. host disease, a result of the transplant that can affect the skin, eyes, stomach and intestinal tract. It could take years for Adam’s body to clear the disease as his body accepts his mother’s cells.
Adam’s face is bloated from steroids; he takes them to control his body’s reaction to the graft, but Amy worries they also are stunting his growth.
When he was born on April 3, 2007, Adam was in the 90th percentile for height; he is now in the 30th.
One beam of light for the Saadas was talking to families of children who have the same affliction, which affects approximately one in 500,000 people.
“It’s good to know that there are kids doing fine, out playing baseball,” Amy said.
For now, Adam isn’t allowed out of the house much. When he is, he usually wears a surgical mask – which he would rather chew than keep on – to protect him from airborne germs. His immune system is so weak a cold could quickly turn into pneumonia.
“He’s on so much medicine,” Amy lamented with a frazzled sigh.
She and her husband, Hussam, are up every two to three hours a night to give Adam medication. The three share a bedroom in Amy’s father’s home.
“How do you do it? You just do it,” Amy said. “You do what you have to do for your kids.”
Donations can be made at http://cotaforadams.com.
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Contact Victoria Macchi at firstname.lastname@example.org