TINA: Malachi was born with spinal muscular atrophy Type 1. The first symptoms that we saw with Malachi was that he was no longer lifting his legs or his head like he did at birth. So when we took him to the doctor, I knew it wasn’t going to be good.
TORENCE: Diagnosis day. There wasn’t really much that they told us. “Take him home and love him, and you’d be lucky enough to have him a year or two.” And there was pretty much nothing that we were given that would have been hopeful.
TINA: The momma bear in me said to the doctor that my son would not be a statistic. And I had to hold tight on that. I went online and was searching for some information about SMA and what that meant for our lives, and I came across a clinical trial. We found the treatment intriguing because it was replacing the defective gene. Malachi at the time of treatment was very weak. He could barely move his hands and his feet. He was not able to lift his head, hands, arms, legs. Malachi was given treatment when he was 4 months old and two days. I’ll always remember that one day. It was a refreshing day. We had a lot of hope to look forward to the future.
TORENCE: After treatment, we felt excited to see what would happen next. Seeing just the slightest movement in his feet gave us real hope.
TINA: He just was gaining more and more strength. He was moving his hands. He started lifting his legs up, and within 2 months he was trying to roll. Since treatment 2 years ago, Malachi has been able to roll, lift his legs in the air freely, lift his arms. He is mobile. He’s able to move himself, gets to point A to point B. He’s very vocal. He was not very vocal prior. And he feeds himself, and that to me is a huge goal. He does not rely on us to do everything for him.
TORENCE: SMA has just changed my outlook on our family.
TINA: It makes you want to take every milestone that the kids do and you just hold on to it that much. Like everything means more now. When Malachi does anything new, it’s very exciting.
MALACHI: I’m Malachi and I’m 4 years old. I like to play basketball. When I grow up, I want to be a firefighter.
TINA: Since treatment, Malachi has gained a lot of strength. He went from barely moving to being able to stand against a chair. He goes to school part time. He loves it. He likes to play games. He plays baseball in gym and kicks balls and reads books and sings along to the teacher’s songs. And I mean these are things that we were told we would never see. Malachi likes independence. He likes to try things on his own and he will try it for a long time before he asks for help. SMA still limits him. He’s not able to walk. He’s not able to run. So he’s not like a typical child where he can just get up and go do what he wants getting dressed, brushing his teeth. He’s learning, but still needs quite a bit of assistance to get through his daily tasks. Managing Malachi’s care today goes with a lot of teamwork. It’s his father and I, of course. And then we have a team of therapists that we work very closely with.
TORENCE: SMA impacts Malachi’s nutrition and growth. He’s actually just now starting to get on the growth chart at 4 years old, which we’re really excited about. He notices that he’s different, but he doesn’t let that stand in his way. Every day is a blessing, no matter what happens. Whether it’s good or bad. It’s truly something that you can learn from.
MALACHI: Never give up.
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