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The Story of Marc

At 6 years of age, Marc, seems to have an uncanny knack or superpower of making everyone fall in love with him. Aptly nicknamed Our Blue Eyed Hero, Mum Bec and Dad Stuart say from the moment he was born and then later at his more regular visits at PMH, with his big blue eyes and blonde ringlets he had everyone literally wrapped around his little finger.

Marc was born neurotypical but at five and a half months, after failing to thrive and noticeable developmental delays he was diagnosed with a rare genetic brain malformation called Lissencephaly (smooth brain) – pronounced a bit like “listen carefully”.

Lissencephaly is a diagnosis that is forever changing, which for Marc at the moment means severe refractory (uncontrolled) Epilepsy, Microcephaly, Global Development Delay (GDD), Chronic Lung Disease, Dystonia, Dyskinesia, Cortical Vision Impairment (CVI) and Nephrocalcinosis with Hypercalciuria. He also has a PEG/PEJ, an external double port that allows all his daily nutrition, fluid, medicine and supplements needs to be administered safely via a tube directly into his abdomen. Without his PEG/PEJ Marc was at risk of aspirating when being fed anything orally.

All of this means he needs 24/7 one on one care for life.

“Our source of strength is Marc and his younger brother Anthony (2.5). With everything that he goes through he still manages to wake up in the morning with a smile and light up everyone’s world,” say parents Bec and Stuart.

Marc’s diagnosis and related conditions mean he is unable to speak with his voice, but he does speak with his eyes.

“There was a moment last year just after his condition deteriorated, spiraled and plateaued that I noticed his eyes were just not right and that was the hardest thing to not have him talking to us. Thankfully it has all come back”

Some other names Team Marc has fondly nicknamed him are Marky Marc and the Funky Bunch and Curve Ball Colin, for as one of his doctors always says, no matter what the curve ball is, Marc takes it in his stride and pushes through.

“The last 2 months have been hell pretty much. Looking back, last year was a breeze compared to what we’re dealing with now. It’s the hardest it’s ever been “

“People always say to me I don’t know how you do it and some days it is really hard. Everyday it’s like crikey here we go again and we all just soldier on”

“The thing is we know it’s not going to get easier.

“For all the heartache and pain seeing him go through what he goes through everyday and how hard it is for him to do what he does (because his brain stem doesn’t function like ours…) it is exhausting and there is a constant cycle of grief”

“So we cherish the good moments as opposed to good days and we keep looking, finding the light every day and of course remember to laugh otherwise you will go insane or drown or both. We used to hide the bad, but that is not fair to Marc or us so now we share both. I really have the best job, the most rewarding job.”

“And we remember to live as a family”

And families mean sibling rivalry at its best, for the Blue Eyed Hero and his sidekick.
“At the end of the day Marc is still a little boy. I remember once seeing Marc lying on his playmat, his regular spot, while his younger brother Anthony toddled around and then at the absolute right moment he gave it his all and managed to swipe his lil brother’s feet from under him. I didn’t know whether to laugh or cry. They love each other so much like any brothers do and it’s beautiful and bittersweet because of course Anthony is so worried and concerned about his big brother, which is not something other kids would normally have to deal with”

One of Marc’s favourite places to be is lying on a blanket or mat under some trees looking up, watching the light and the dark moving though the leaves.
“He does have a vision impairment but he can see shapes and light and dark and he recognises us and people he knows. We often put a blanket down under our plum tree and lay underneath and look up. And we often go to a park as a family.”

Every year Marc has some intensive blocks of Physical Therapy in addition to his weekly Physiotherapy, Occupational Therapy and Speech Therapy. The combination of therapies all work at maximising and maintaining his strength, abilities and quality of life. One of his physical goals is building up his legs, neck and torso to be able to one day hopefully sit, crawl or walk- all very much unknown at this stage.

“The community at large has been so supportive in organising fundraisers and attending and sharing our journey and sharing our highs and our lows”

“One of the biggest things is when people talk to Marc and talk to us. It can be confronting, but this is our normal day to day experience. I remember when I was out with my friends for coffee when Marc was younger and it is normal for him to stop breathing, but my friends were like is he ok?, are you ok?, and he was right there with us so now my friends know what I am looking out for and monitor and now we all know and it has become all of our new normal,

“So if you’re not sure just ask. Say hello. Don’t be afraid to ask. Just talk to him. Talk to Marc. Talk to us. And if your kids ask, say hello.”

“Remember he’s just a little boy who wants to explore too”

For anyone new to any diagnosis, Bec advises
“Keep asking the same questions regarding any questions of your child. Never doubt yourself. Always believe in yourself as a parent and never stop believing in your child”

*Since the time of writing, Marc’s condition has deteriorated, but he continues to fight.

You can purchase prints of Marc’s artwork here.

 

Author
| Caroline Dempster 

Artwork by
| Dylan Nietrzeba | Dylan Nietrzeba Art
www.facebook.com/dylannietrzebaart/ | @dylannietrzebaart |

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