Valentino, the Angel of our lives, is now 4 years old. We eagerly awaited him and he was the most anticipated child in the family until he finally arrived on January 11, 2020. He was born just like any other healthy child. During the first 6 months, there was nothing to worry or alert us. Then we noticed he wasn’t sitting or crawling like other children his age. We let it pass, thinking each child develops differently as his pediatrician had told us.
As his first year passed, Valentino neither crawled nor walked. We were advised to start therapies to stimulate his motor skills. At 16 months, he started crawling, which was a great joy for us! However, the therapist noticed that Valentino’s head was slightly larger, something that no doctor had ever pointed out to us.
At 2 years old Valentino had his first seizure. I had never seen a seizure but my intuition told me that was what was happening. We visited the neurologist who immediately requested an MRI. In a way, we were lucky because from what I’ve seen in many cases, the diagnosis can take a long time. But not for us. As soon as the neurologist saw the MRI images, he told us it was a leukodystrophy. I immediately researched and everything I read broke my heart into pieces. Our lives crumbled. I can imagine these are feelings many others felt upon hearing the diagnosis. There were many unanswered questions and days of uncertainty. We did a genetic test and learned that Valentino has Alexander Disease. In my country, Peru, there are no similar cases, little information, little interest and few resources. Desperation invaded us. But seeing Valentino’s smile, seeing him happy, full of energy with that peace and love only he can transmit drove us not to stay stuck. We informed ourselves, searched and managed to reach CHOP and Dr. Waldman who is possibly the best medical support we have. Traveling to the US is not easy or cheap but here we are giving everything to our beloved son.
To date Valentino has had 4 seizures. The last one lasted about an hour. I feared he wouldn’t wake up the same. These situations devastate us greatly! Who in this world is prepared to see their children suffer? Recovery is difficult. There are minutes of suffering, tension, uncertainty, pain and despair. But Again Valentino wakes us himself again, that angel who brings light to our lives. He gives us strength to move in the direction we need to be resilient.
Society doesn’t make this path easier. There are so many obstacles, prejudices, inappropriate questions and so much impertinence. But we are learning and facing everything that comes our way. AxD is not just a terrible disease; it is a social, financial, and emotional challenge. But our children teach us everyday to deal with it. They are divine beings who came to this life to teach us many lessons. They have a unique angel in their hearts. Valentino can turn the darkest moments into light with just his smile, with the unique quirks love he offers, his quirks, his sweetness, intelligence and intuition. He makes us not give up. He doesn’t understand the meaning of leukodystrophy, but he shows great strength to someday walk, talk, and keep learning.
Our native language is Spanish, but Valentino loves to say words in English. He loves singing with his mom and spending time with his parents before bed. Moments we all cherish. He keeps showing achievement in his motor development crawling or walking by holding on to things. How happy his achievements make us. No matter how small they seem, they are tremendous feats for us and we celebrate them.
We don’t know what tomorrow will bring. We are aware of the reality of Alexander Disease. We have to move forward with strength and fight every dat to keep the hope of a treatment or cure in our hearts. In the meantime, we will remain firm and continue to give EVERYTHING, absolutely everything, for him and for this community that often feels desolate. Just by hearing we are helping another AxD familiy we are makes the fight less difficult.