Niko's Story

Images Captured by Adelle Munk Photography

Meet Niko.  Niko is like every other fifteen-year-old boy in many ways: he loves music; he goes skiing up at Big White; he goes snow tubing in the winter and tubing on the lake in the summer; he goes to movies, swimming, water sliding, and has gone on amusement park rides; he has been a part of Kelowna Minor Football Association as an assistant coach on his brother’s football teams and he has played in the Middle School Cup Football League for his school; he enjoys spending time with friends and family; he enjoys interacting on Facebook; and his older brother, Mikhail, is his best friend.  Although this sounds like a typical life, Niko’s has been through more in his fifteen years than most people go through in a lifetime.

Niko’s mother, Jane, had a typical pregnancy.  Although she was diagnosed with Gestational Diabetes requiring insulin three times a day, there were no signs that she was going to be the mother of a special needs child.  Niko John William was born at thirty-five weeks gestation on November 26th, 1995 weighing six pounds nine ounces.  

Niko was born with Congenital Cytomegalovirus, which is a cold & flu virus that was contracted during pregnancy.  As a result of this virus, he was diagnosed with Spastic Quadriplegic Cerebral Palsy.  Upon finding out about his condition, his father, Bob, and his mother realized that there would be certain challenges to overcome.  His mother said, “When we were told that our son was going to have special needs, it didn’t bother my husband or me at all.  Yeah, sure we were upset, but the world is not going to stop because Niko will have challenges that we will have to face. I told Niko when he was born that he has a brother who is three years older than him, and that we will continue on with our family life as if there wasn’t anything wrong ... We would adapt so he could take part in all the activities his brother participates in and [the activities] we do as a family.”  She told him that he was going to have an amazing life.  Together they would overcome these issues as a family, they would learn to deal with them, and learn to adapt to help him to become the best Niko the world has ever seen.

Although Niko’s family had prepared themselves for the long road ahead, there were far more challenges yet to come.  A diagnosis of this severity means that there is a high risk of aspiration.  This means that Niko would need to be tube fed and his air way would need to be regularly suctioned to prevent pneumonia.  Niko is non-verbal (although he does make sure to get his point across in his own way), he is in a wheelchair that has been customized to support his body, he has Cortical Visual Impairment and moderate hearing loss, he has been diagnosed with Osteoporosis, and he has had other complications due to Neurological disabilities.  He has had major surgeries on his hips due to frequent and painful dislocations, and last year he had spinal surgery to correct a severe curvature in his spine which was putting him into respiratory distress.  To add to this list, Niko’s family almost lost their precious angel in 2007, but he showed everyone when he fought back and overcame the illness that almost claimed his life.

Niko’s story is one of truth, strength, and love.  Meeting him and his family is a life altering experience. To meet Niko and get to know him is an honour and a pleasure to all who have come across his path. He is his mother’s ‘Angel from Heaven,’ and his family knows that he is here for a purpose – to spread his love and teachings to the world.  His mother said, "I believe that God sent Niko to me because he knew that he was an angel, and he needed a family that could deal with his disabilities and his life illness … People who have children who are sick, their marriages don't seem to hold together, but I can say it has brought [our family] together... The people he has touched, how he has opened their eyes to see how he isn't handicapped but handicap-able ... he has done so much in teaching people to see him first before they see his wheelchair, his disability, or his diagnosis.  [He shows them] how strong he is, what he has overcome, his positive outlook on life, and how he accepts what his life has offered him. His strength, courage, and his will to keep living.”

Niko’s family does not know what the future holds for Niko. Doctors have prepared them for the inevitable; his life will not be as long as they would like it to be.  At this stage of his life, they live every day to its fullest, and every morning that they are welcomed by his smiling face is a precious gift.  Jane said, “We can only take it one day at a time, embrace his love every day, and share him with those who need his love and faith.  Right now [a goal is for him] is to be there to see his brother graduate in June 2011, and then the next huge milestone would be to see him graduate from high school in 2013.”  His family knows that he will one day join his grandparents in heaven, and that they will have one more angel looking out for them.  Jane prays, “that he will pass away peacefully in his sleep” and that his family will be there to hold him and kiss him goodbye.  His mother also said, “Knowing that my parents, who have passed away, will be there with him to help him towards his next journey, and knowing that he will no longer be in pain – he will be a "typical" child –  is what helps me over come my fear of losing him.” 

Niko's brother wrote this poem and essay when Niko was little, and it tells a lot about Niko and his strong family:

DON’T TAKE THINGS FOR GRANTED
My Brother.
His legs are wheels.
His voice, a squeal.
His thoughts are mine, my thoughts are his,
We’re just kids.
He may be special,
But to me he is EXTRA FINE
That brother of mine!

So many people take their day to day life for granted. Walking, talking, eating, and even thinking, but you see my little brother Niko can’t do any of those things. He is unable to walk, talk, eat anything by mouth, or to even think the way we do. Niko can think his own thoughts but is unable to communicate them to others. For those that know Niko, they can understand him, but those that don’t take the time to get to know how he expresses himself --- take it for granted that since he is in a wheelchair he has no personality.

Niko has cerebral palsy so his body doesn’t work like yours and mine. His legs are wheels --- which to me is pretty lucky because when we go to the Fat Cat Festival, or shopping he doesn’t get tired from walking and if he really wants to he can even have a nap while this is all going on. His voice is a squeal --- but he is able to communicate if he is happy, sad, mad, bored, tired, and even frustrated. I like to think I know what he is thinking and to be able to give him what he wants, and 90% of the time I am able to.

   

People tend to feel sorry for us, but don’t --- Niko and I have a great life, and because of my situation I see people in a whole different light --- everyone is special because God made us that way.

    I wish everyone wouldn’t take their life for granted, to be thankful for what they have and what they can do, because you never know one day you might be unable to do things just like Niko. Remember, life is too short – don’t take it for granted!

                                                                                                    By Mikhail Maloff

                                                                                                    Grade three-- 2001/2002

Story by Adelle Munk