Meet Lukas. Lukas loves to dance, sing, swim, go to school and he loves to meow like a cat…. among other animals. He was meowing during our photo shoot. And he didn’t stop smiling the entire time I was there!
Lukas has a large AVM (Arterio Venous Malformation) [1]. This is a malformation of the arteries and veins in his brain causing areas of the brain to not get the oxygen/blood that it requires. It is causing his brain to die. The doctors told his mom in April 2010, that Lukas has less than 2 years left in this life. He suffers daily from seizures, debilitating headaches, and Cerebral Palsy [2] among other things. Unfortunately, there are no other treatment options for the little guy.
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“The most amazing thing about this journey is that through all of this Lukas is the happiest boy I have ever seen. The PICU nurses told me that they don’t usually see a boy smiling, let alone laughing and playing” says mom Sondra. “Lukas inspires me with his ability to be happy regardless of his situation” she added. She hopes and prays that he will experience things that a typically developing child would. Things like play dates, horseback riding etc… She fears losing him but has had to accept that one day this will happen. She just prays that she will be there for him in his final moments.
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“It is important to live every day “for the moment”. We never know if Lukas will be well enough to get out of bed in the morning, or if he will make it through the day. When he goes to bed, we don’t know if he will wake up. Every day needs to be a fun day…everyday needs to be lived to the fullest “
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AVM (Arterio Venous Malformation)
For more information go to
https://www.childrenshospital.org/ [1]
Story written by Billie Depatie
Photos by D4 Photography
www.d4photography.com [9]
Read More Stories From The Tiny Light Foundation [10]
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- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [14]
- Coping with the Life You Never Imagined [15]
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- Miracle Babies What You Need to Know [17]
- I Do Not like Being a Special Needs Parent and That’s OK [18]
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This post originally appeared on our January/February 2012 Magazine [20]