Super Matthew

Super Matthew has super strength, he never lets the pain he lives with stop him. He is brave, he is a fighter, and he is resilient.  And he has insane amounts of courage.  But most of all he has a super light in him that brightens even the darkest of days.

At the age of 3 Matthew was diagnosed with Mucopolysaccaridosis II (MPS II) also known as Hunter Syndrome.  Hunter Syndrome is classified as an Ultra Rare disease that is caused by the lack of the enzyme iduronate-2-sulfatase (I2S). Due to the missing enzyme GAGs accumulate in the lysosomes of a variety of cells.  There is literally not even ONE part of Matthews body that is not affected by this disease, all the way down to his hair follicles.  This is the equivalent of taking 100 different diseases and putting them all into one little body at the same time. Matthew is severely affected both physically and neurologically.  It is a progressive and degenerative disease.  There is no cure and it is terminal.  Matthew has had countless procedures and operations in the last 3 years.  And he is currently doing weekly infusions and chemotherapy.

Matthew sure enjoyed his Super Hero costume and running around the studio.  The only time he would hold still was when he was lounging in the studio chair or adjusting his mask and checking himself out in the mirror. Amber had informed me beforehand that he wouldn’t likely wear any of the gear I told her we had. Imagine everyone’s surprise when he so willingly allowed his mom to put this mask on him.

“Matthew is great at adapting to his limitations.  He has found his own way to do simple tasks that he can not do ‘typically’.  But I would say that his biggest accomplishment was that he saved me from myself, and he does not even know it”

“Matthew is such a happy little boy.  Despite all that he goes through he is full of smiles and laughs everyday. His smile melts my heart, and even though he can not talk, I see a huge amount of love in his eyes when he looks at me. He does not let anything hold him down for long.”   Amber, Matthew’s mother.

I was not at this shoot though I really wanted to be. But I was worried when I asked Amber (Matthew’s mom) if they would be able to do it last minute knowing that it would be the very next day after he has his weekly chemo infusions. But she was more than happy to accept. I warned Steve that Matthew would be having that done only the day/night before (he literally spends all day long on Fridays at the RTU of Primary Children’s hospital, even stretching into the early morning hours of the Saturday after sometimes)…. But Steve informed me he never would’ve known that had I not told him. This kid never slowed down one minute. He is truly a remarkable child, and his mother is truly remarkable herself. We are in awe of them both.

We have some exciting the news!  We have 2 calendars featuring our True Superheroes.  They will be available for purchase on November 28th.  These calendars will help us to continue doing the True Superheroes photo shoots.  Here is a preview.