Alex "Warrior of Hunter's Syndrome" Mom writes To my sweet boy,
I knew you were going to be special, since the day you were born. Started right out, keeping us on our toes. After a 9 day, extended stay in the hospital, we were home. With a small list of specialists, our journey began.
Over the next couple years, you were faced with many typical childhood illnesses. Sinus infections, pneumonia, bronchitis, ear infections.... just about everything, but Nothing that raised concerns about your future health. When you were 2, we started noticing things... such as the struggle to lift your arms, or the inability to straighten your fingers. As we started digging into this, we found ourselves at multiple different doctors appointments, searching for the reason behind it.
It was April, 2013... another appointment, our first-ever visit with a genetics doctor. This day, was the day, we finally had an answer. Mucopolysaccharidosis.... a word that would forever change our outlook on life. It was later that year, we learned you had MPS II, or what we call, Hunter's Syndrome. At this point, we decided to make as many memories with you, while we could. While life was still easy.
Despite your Hunter's Syndrome diagnosis, and the challenges that come with it, you have shown a phenomenal amount of strength. You have a huge heart and a love for everyone. You light a room up with your infectious smile and a belly laugh, worth a million ridiculous antics, just to hear it again. Your hugs are the cure for most bad days... because in that moment I'm just thankful to have my boy.
As each birthday has come n gone, so have many of the milestones you were able to meet. You see, as a boy with Hunter's Syndrome, the cards are stacked against you. Not only do you need to work extra hard, to learn things as simple as walking and talking, but then you just lose it. You stop talking... or you forget how to walk. Your smiles are fewer these days, and your voice is somewhere deep inside. A voice that we once took for granted, has fallen silent. I know the wheels are turning and I know you are trying to tell us, exactly how you feel. The words just don't come out anymore.
As I sit and stare at my handsome little man, I wonder what you are thinking, how do you feel, are you ok? Have I done enough?...
Alex, you have given me an undeniable strength, knowing that with all you have been through, you still wake up each day to face another day.... usually with a smile. You have taught me patience and you show everyone an unconditional kindness. You are my hero and an inspiration to myself and everyone that crosses your path. It's truly an honor to be your mom.
Alexander Nathan, you are my Superman... my SuperAlex! The strength you put into each day doesn't go unnoticed.... I know some days are harder than others, and some days are more exhausting, but my little dude... you face it head on like a rockstar! I love you, dude!💜💜💜
Alex inspired the 'Customized Giftbox" for Warrior Kids forever more. Giftboxes would be given a 'theme' allowing fans, family, and friends to send gifts that are themed to the giftb ox. See Tatiana Warrior of Sunshine
Alex taught me a community will come together for it's Warrior Kids but there has to be someone asking.