By Dierra McDaniel
Mommy to Leon
Leukoencephalopathy with Thalamus and Brainstem Involvement and High Lactate (LTBL)
Born March 2023
Right after he was born, Leon vomited frequently and struggled to gain weight. We visited our pediatrician and lactation specialists constantly in those first few months, trying to find successful ways to feed him. He continued to not grow appropriately. Tests were done to check his swallowing and digestion, but they found no explanation.
Finally, his pediatrician ordered a blood test based on an obscure experience she had during her residency, and we found that an acid level in Leon’s body was more than five times what it should have been. That blood test is what led us to consult with a geneticist.
After waiting weeks for genetic testing to give us a result, Leon’s geneticist called us when he was about three months old. Ironically, she was at a conference for kids like Leon. She told us the testing confirmed he had a mitochondrial disease called Leukoencephalopathy. In those early days, we were told he may never walk or talk, and that living past the age of two could be unlikely.
When we first got Leon’s diagnosis, we were still in the trenches of simply getting him to gain weight. After the initial stunned feeling and fear of the unknown, it was hard to spend much time worrying about it. We were actively trying to get him healthy.
Before Leon was born, we didn’t specifically think about hopes and expectations for him. We assumed he’d be a typical kid and would live his own full, amazing life. It has really only been after the diagnosis that we’ve realized we had expectations that weren’t necessarily verbalized. We wanted him to play sports if he wanted to and do normal kid stuff. We wanted to travel with him, and we wanted him to grow up.
Leon has had multiple stays in the hospital. We have both been able to stay with him throughout each stay, and most have been less than two weeks. But when he was four months old, we lived in his hospital room with him for three months. His vomiting and lack of weight gain had reached a level of acute concern, and we, along with his geneticist, pushed for his admission so that more could be done to help him.
Emily worked remotely from the hospital room for the duration of the stay, and I worked tirelessly with both feeding and physical therapists. The medical focus of the stay was an attempt to determine why he was vomiting and why, even when he didn’t vomit, he still didn’t gain weight. When answers weren’t obvious, we fought a nearly daily battle with the doctors to keep searching.
After three months of tests, trials of medicines, several scopes that required anesthesia, and a surgery to place a permanent IV and a feeding tube, Leon was discharged with a diagnosis of unexplained intestinal failure.
Fortunately, the IV nutrition had transformed him into a rounder, stronger, more energetic little guy, but we walked away with no answers.
Leon’s first photoshoot with On Angels’ Wings was in July of 2023, the day before our three-month hospital stay began. A Google search done by Leon’s grandmother got us connected with On Angels’ Wings. That first session was surreal. We went into it knowing he would be admitted to the hospital the next day. It was already scheduled, and we were thinking these may be the only family photos we would ever have with Leon.
Sarah, the volunteer photographer, was absolutely wonderful. We’ve been paired with her for all of our sessions since. She is flexible but has ideas when we don’t, and the care she puts into her photography was evident. Each photo session is a small reprieve and moment of joy for us.
Leon’s overall health has improved dramatically since we got his diagnosis, thanks to the right nutrition. He is currently on continuous IV nutrition as well as feeds through a tube in his stomach. His health is stable, and we’re immensely grateful for that.
He’s stronger and closer to walking on his own than we ever thought he would be. He just turned three, and he’s forming meaningful sentences—he talks all the time. After being malnourished for so long and having severely delayed growth, his speech is on par with other kids his age.
Leon loves dogs with a fiery passion. If he knows you have pictures of dogs on your phone, he will not rest until he’s seen them all several times—bonus points if the dog has a leash. He is picky, though, in both dog content and real-life dogs. For example, he only cares for the original version of Clifford, not the remakes, and real dogs can’t get too close. Leon will say “no” and that he’s “all done” if they do. He just wants to admire them from far away forever.
Throughout each step of his journey so far and all he has already overcome, Leon has always been infectiously happy. He hasn’t always been strong enough to laugh, but from the moment he learned he could do it, his laughter has been filling rooms and hearts.
Our biggest hope for the future is for Leon to stay happy. Regardless of what his abilities and limitations are, we just want him to be happy being him. From a caregiver perspective, our hope is that Leon can remain physically comfortable no matter how his disease progresses in the future.
Our first photo session has continued to carry an extra special importance to us. When Leon started to gain weight in the hospital not long after that session, those pictures showed the progress he was making and motivated us to continue to work hard to advocate for him.
Now, a couple of years and a couple of photo sessions later, the ongoing value of those sessions is becoming clear. On Angels’ Wings is providing us with beautiful, high-quality memories and reminders of how special Leon is to us and that his smiles, laughter, and joy are what matter most.
Not to be too bleak, but the sessions we’ve received and will receive are important because, at the end of it all, photos may be all we have. They capture moments that we can and will look to and draw strength from in hard or challenging times—like dealing with doctors or countless appointments now, as well as into the future when Leon’s disease worsens.
The services On Angels’ Wings provides are priceless to the families they assist.
