Saladino Family

07.09.2024

Henry Saladino can say a few words, but his mouth and tongue don’t cooperate with his thoughts. He understands everything other 4 year olds can, but his genetic disease, alternating hemiplegia of childhood, or AHC, has made life far more difficult, frustrating and scary than for the other kids his age.

Like Henry, Mila struggled to tell us what she wanted to say. I can still feel the sadness of watching her try so hard to form the words, only to sigh, bow her head and give up.

Henry’s parents find their way of connecting. They sit beside him and say, "how much do we love you?", waiting in silence as Henry responds by reaching one arm up high to say "Soooo much!!". Then they do the same to show him they understand.

07.11.2024

Every week, Henry has numerous seizures lasting 5-10 minutes each. On top of that, every month an even bigger, terrifying one hits unexpectedly and lasts 15 minutes, sometimes more, requiring resuscitation and ambulances. Each time, his parents beg the universe not to take Henry, not this time, to give him just a little longer to make it to a treatment that scientists are racing to develop and get to him. 

In just the last year, two of the few children in the world with Henry's mutation have died. His parents haven't told him, but he senses their fears, crawls over and kisses them as if to say "don't worry, I'll be ok." His parents know that only a genetic treatment will make this come true.

07.16.2024

For many of us, walking is just something our body and brain know how to do. Before I watched Mila lose her ability to run, then walk, I had never realized how precisely numerous different functions had to come together for a person to take just one step. 

For Henry, it takes everything in him to walk just a few feet from the playground slide to the bench. He wants to be independent like other 4 year olds so he tries, but he knows he may fall. He feels his dad's hand on his back, the support he needs, and so he takes another step.

07.18.2024

Henry's favorite toy is Lion, a small wooden shape with lovingly worn off paint and rounded edges. He fits perfectly in Henry's little hand. Lion goes everywhere with Henry. He eats Henry's snacks, takes his medicines before he does, and if Henry isn't thirsty, but Lion is, Henry takes a sip.

Henry's disease, AHC, may have robbed him of much of his mobility and speech and threatened him with seizures, but playing with Lion makes him feel like just any other kid. While fighting for a treatment for Henry, his parents make time for these little moments. They walk the fine line of balancing the future and the now. They watch as Henry sits on the floor, moving his body as he can, creating an imaginary story around Lion. They feel Lion's excitement through his sounds, see Lion running through Henry's quickly moving legs.

As Henry plays, I can't help but think of Mila smiling so widely, her fingers wrapped around her snowman Olaf, lifting him and dropping him, the only way she had left to play.

Despite the everyday pain, fear and exhaustion, these are the moments that parents like us hold tightly to, the ones that keep us going.

07.19.2024

For Henry and his family, the seizures never get easier. Each time a big one comes on, the fear is the same. It's just another day until time stops, just like that, and a seizure runs through Henry's brain like a storm.

His parents, Mary and Anthony, drop the blocks they were building with Henry and snap into clinical mode, urgently grabbing the rescue medicine from Henry's bag, injecting it into the side of his mouth, laying him on the floor and setting the phone beside his limp body watching the clock, mentally calculating how many more minutes before they call 911 and what needs to be packed before the ambulance arrives.

On a lucky day, the seizure ends at home. But on the worst days, they clench their hands together in desperation and silent prayers as Henry is rushed to the hospital, not knowing if he will return. At the end of these days, Henry falls into a deep sleep from the devastating seizures and medicines that have rushed through him. His parents fall in bed beside him, hold him close and silently cry.