Theo
When I was first learning the guitar, I remember feeling frustrated when I wasn’t able to play certain chords right away. My fingers weren’t exactly cooperating, and it would take a lot of time, practice and hand aerobics to finally land these chords and string them together into something resembling a song.
It’s funny, that years later, I would witness my young son, Theo, endure similar frustrations with simple gestures and movements day in and day out.
Theo has a condition called Angelman syndrome (AS), a rare neuro genetic disorder that causes global delays, afflicted motor coordination, renders him incapable of vocalizing words and, at times, causes seizures.
To be clear, Theo’s challenges aren’t with guitar strings or anything quite so intricate, but with accomplishing the most meager of actions – turning a doorknob, creating a steady pointer finger, grabbing a zipper or using a fork to spear food. And that’s just the start. I think it’s fairly accurate to report that life with Angelman syndrome, for the children and their families, is on par to scaling Everest twice a day. Backwards.
Collectively, we are beyond fatigued. Climbing those mountains alongside our sons and daughters takes everything out of us, and even when there’s nothing left to give, we have no choice but to keep going. Somehow, we learn to persevere through the most difficult of times and emotions. One thing our little village has realized repeatedly over time: our children don’t give up, so why should we?
What we all wouldn’t give for a breakthrough that would help our children possess stronger and more intentional motor skills. Though a potential cure is set to happen in our lifetime, we pine at this very moment for improvements, however small, that would help our children in their ability to communicate and to thrive.
I would cry tears of joy if Theo could dress himself. Having a 5-year-old that could slip on a pair of pants or change his own shirt should not be a lofty dream that’s out of reach. But for me, it would be an incredible time-saver, a game-changer, and a proud moment that I would relish every single day.
Of course, walking and standing aren’t the only things we want for our children. We also want them to experience the fun of childhood to the fullest capacity: steadily holding and licking an ice cream cone before it melts, playing a video game alongside their peers, or cutting their food with a knife and fork.
Some of our children can’t use straws or pull up their socks if they start to slip. While these might seem like minor things to many, in our world they are skills that can take years to learn.
We love and cherish our kids regardless of their abilities, but we’re also striving for a higher quality of life for them. They deserve that. Thankfully, these small improvements are on the way to becoming a reality due to a number of Angelman-specific therapeutics that are currently in the pipeline and on the way to our children. We wait with hope.”
To read Christina’s complete story, click HERE.