Warrior Children Bio's
Warrior of hunter's syndrome
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!
To order Tshirts for alex's fundraiser- please visit
painting request: alex - superhero buffalo bills style-
anyone wanting to donate buffalo bills gear- please email me at firstname.lastname@example.org -shipments to thewarpaint project should be sent by 02/12/2020 in order to meet the Valentine's day gift delivery!
Warrior Stone Man Syndrome
From mom Jenn
Mia was diagnosed with F.O.P. aka Stone Man Syndrome. She was diagnosed January of 2018 after a week in the hospital with a huge lump on her neck. She was so brave through all the tests. But what was so frustrating was that all the tests came back negative. None of the doctor's could understand what was going on. They sent her case to 5 other hospital's until one came back with a possible answer. We thought thank goodness but nothing prepared us for what they would tell us. After so many appointments and X-rays, we found out that yes. It was F.O.P. It is where her ligaments and muscles will turn to bone over time. It forms a second skeleton. She will become like a human statue. It is very rare. There is no cure. However, we hope and pray everyday that her specialist will find one for her and others who have it. We have to fly out to see her specialist because there isn't one where we live. It has already attacked her neck, her left shoulder, and apart of her spine. Mia is very shy, smart, loves animals, and wants to be a veterinarian. She loves unicorns. Her favorite character is Elsa from Frozen. She loves L.O.L. surprise Dolls and making crafts.
Warrior of Childhood Cancer of the eyes
Painting Request--Ballet themed
Julia is outwardly your typical adorable 3 year old! She loves puppies, princesses, rain boots, and mud! She adores her two older brothers and wants to be a firefighter when she grows up.
Julia was diagnosed with cancer in both of her eyes just shy of 18 months old. At diagnosis her tumors were graded the most severe and our local Children’s hospital of Wisconsin does not treat her type of cancer as it is so rare. We were told that we had 2 hours to board a plane and get Julia to New York to see a Retinoblastoma expert!
Julia has Bilateral Retinoblastoma(both eyes) she has one remaining eye as her right eye was removed to save her life. She has 30% vision remaining in her left and only eye. She sees the world better than any sighted person, she only sees the world with joy. She is definitely a special gift that at just 3 years old she shares humor and Compassion all through her sense of the world without even needing much sight.
She is truly inspiring and she is so proud of her differences, as we all should be.
Warrior of CDLS
This... Is for Aubrey. It is my heart on display; she hangs the moon and sun, she pulls the stars into the sea, every letter in a bottle is written to her. Her tail the keyboard that sings the song for creatures to gather around as they watch her place the moon up high. I love this painting. I'm so excited for her to have it. And, to you, Dear Aubrey, a fairytale for your wall.