04/04/2026
Questa purtroppo è l’mcto… che arriva come un tornado e vederlo sui nostri figli fa male… molto male
Questi sono i momenti che non condividiamo spesso ma che purtroppo ci sono e non sono rari
Forza Adelaide’s Neighbourhood e forza a tutti noi contro mcto 💪🏻
We try our absolute best to be positive despite our circumstances. But, to be honest, watching this disease progress in our daughter is pure torture that I would never wish on anyone. Hearing your child scream in pain that over-the-counter pain killer cannot dull is a nightmare. Hearing her cry and whimper “it hurts so bad” is a knife twisting in my momma heart. Watching her contractures progress and witness rapid deterioration of her body is the most painful thing I’ve ever experienced in my life. Holding our child and crying along with her knowing there’s no cure and that this disease is progressive feels like a slow death of my soul. Knowing when we go to the doctor to tell them what is happening that they won’t have an answer and are lost on how to treat the disease feels hopeless.
Yes, we persevere. Yes, we find joy and thankfulness in each day. Yes, we hold on to hope. Yes, we keep our faith. Yes, we advocate for every thing we can possibly do to help slow down the progression and help control her pain. But Multicentric Carpotarsal Osteolysis is such an awful disease. These are the moments we don’t often share, but they are the reality of our experience. Navigating an ultra rare disease is like shining a flashlight into the abyss. There is a deep grief that never quite goes away and a constant worry of how this disease will impact her future.
Through it all, we take it one day, one hour, one moment at a time, walking hand-in-hand as a family. All we can do is show up and let Adelaide know we will never stop fighting alongside her ❤️🩹
