Ada Sloane Weidner
February 21, 2024 – March 29, 2026
USA
From Ada’s Family:
Ada was diagnosed at 1 month old with the E253K variant of KAND, which is one of the most/more severe variants. She was immediately our little baby doll, nicknamed by friends as the household queen very early. Though cute and snuggly, she was also so feisty. We would say she was being “spicy”. She may have been born with a left vocal chord paresis, but she would let you know how she felt. Our girl was always so expressive and had an eyeroll/sigh combo for almost any situation. We maintain still that nonverbal does not mean non-communicative. She was a clever little girl who could tell you with one hand and her eyes what she wanted, or even just her eyes/face.
She struggled with control of her body movements and hypotonia, but still was so determined to move herself, learning how to roll from a seated position to her belly or to her side against her own limitations. She loved music and to dance–maybe because Mom had danced all through her pregnancy. Her favorite band was Starset, but she really enjoyed most hard rock/metal, which may be hard to believe for a baby/toddler. (That’s Mom’s fault, too, for listening to it all the time.) She would try to dance to her favorite songs, and if her body wouldn’t move, she would use her head and eyes to groove in time/tune.
She loved to snuggle and watch movies or be read to, which we did almost every night after her siblings went to bed, and sometimes with them before bedtime, if her treatments allowed. Her favorite movie (and her siblings’) was K-Pop Demon Hunters, probably because of the upbeat music and all the colors. She loved burgundy, yellow, blues, pinks, purples, and bright things, including lights. A close second and third had to be Moana and Trolls. She would watch those at home or in the hospital with her family and nurses.
She was restricted to a keto diet most of her life, because she had medication-resistant, intractable seizures. However, her parents worked to make sure she still had her favorite foods as at least tastes–she loved butter chicken curry, black beans, and caramel ice cream. Her love for her brother and sister was so deep, and she looked for them always. Even though she never was able to form full words, she said some sounds awful close to their names while watching and playing with them, and “mama” when she was mad. Her happy place was in her “hang” as we called it, because she liked her swing, but liked it even better when it wasn’t moving and she could look around at her own pace.
Ada loved the stars, too. After a bout of RSV in January 2025, she fell in love with a galaxy projector while in the hospital, so we made sure she got one as an early first birthday present when she came back home after that time. God help you if you didn’t turn that on for her quick enough–you’d get an earful and her signature “angry pose”, which was two little fists in the air and a hard stare, maybe with a growl to get her point across!
She was Daddy’s girl, too, and loved best to snuggle with Dad on the weekends/his off days, taking naps with him in the recliner. He could almost always get her to fall asleep when her belly was upset with a good recliner snuggle.
Ada’s mutation caused a lot of complications for her, and we spent a lot of time in the hospital, including her second birthday. She left us too soon about a month later, passing at 10:30pm on March 29th, 2026.
We weren’t ready. We were never going to be ready.
We are choosing to believe that she’s doing all of the things we wanted for her in this life, because she’s no longer limited by a condition that no one deserves.
No longer trapped in her own little body, her beautiful eyes still sparkling with her big personality.
Do us and Ada a favor. Hug your babies/people tight. Never waste a moment/a chance to make a memory. It’s always worth it.
Ada still has an adventure ahead of her, and we are anxious to meet her in the next stage of the journey, but in due time. We miss her greatly, but we know that she will be waiting for us, our same feisty and blue-eyed baby doll, just beyond her favorite stars.
Ad astra infinitum, Ada amata.
Into the stars forever, beloved Ada.
