Charlie Simpson might be the most interesting kid in New Orleans, and this is saying something.  On a given day you might find him walking down St. Charles Avenue, in the shade of massive live oak trees, together with one of his parents, his older brother, Beckett, and his Airedale terrier, Monty, while Charlie stops every few feet to quickly but carefully pick up a Junebug or a caterpillar or a pill bug.  He places them carefully into an emptied plastic bottle which he has furnished with sticks and leaves for their habitat and keeps a dozen or so of these makeshift terrariums around the house.  The kid simply loves bugs and is unafraid of any animal.  Charlie also is prone to spend an entire day in a swimming pool, where he floats on his back and dives at toys for as many hours as he is allowed.  He has favorite movies – very favorite.  The original 1984 Ghostbusters has played in our living room no less than 1000 times over the past three years and the Minions/Despicable Me series are catching up. 

Each of Charlie’s preferred activities are disrupted for school (he is more tolerant of this now than ever but still skeptical of why it should interfere with his chosen routines;) and also by the administration of his medicine through his G-tube.  We reflect that given the 6 times daily he must receive meds and nutrients this way, and average of 5 syringes per administration, and 6 years since the surgical insertion of his tube shortly after his cystinosis diagnosis, he’s received a syringe of medicine at least 65,000 times.  It’s safe to say he’s used to this rather harsh regimen, and so are we.

But times are changing and we have greater confidence than ever that Charlie’s medical dosages will dial back substantially.  When Novartis announced the trial phases for a cystinosis cure just this past April at the 2025 Day of Hope, we could not have been more encouraged. Thanks to years of dedication and hard work from the CRF and Stéphanie Cherqui and so many others, the promises of a cure were materializing. We have gone from the terror of a mysterious illness plaguing our infant to, now, that darkness giving way to a sunrise on the horizon. We hope everyone young enough for the first phase of the trial is seriously considering it, and that everyone else is eager for their turn. 

Charlie is on a first-name basis with most of the doctors and nurses at Children’s Hospital in New Orleans, where he has not had to visit for a medical emergency in several years, but complies pretty effortlessly with his regular visits for blood draws and other checkups.  We suspect that the staff will miss him after he is cured.  Maybe we’ll bring him back to visit on a consistent basis, but instead of needles and tests, he can scan the hospital for pest control.  That sounds nice. 

Love,
Carli and Kevin Simpson