Mackenzie Kulawy’s seemingly last hope is medical marijuana. We watched our beautiful little toddler with a quirky smile turn into a zombie at age 4, taking medication that in the end didn’t help her seizures. Then, she experienced withdrawal from being taken off of it – which many adults find difficult.Then going on a very strict ketogenic diet with food amount weighed in grams that controlled her seizures for a while; then this thing called Doose Syndrome (referred to as the “Beast” by parents of children who have it) would rear its ugly head, a new type of seizure would present, other medications would be added or discontinued and the diet “tweaked” yet again.
All of this while trying to grow and learn. It’s a heavy burden for a child to bear.These seizures are not typical; there is no warning – just a fall, a stare or a jerk – and none of them pain free. Imagine that. Furthermore, every seizure she has causes more damage to her brain. Already diagnosed with traumatic brain injury, she also has ADHD (that cannot be treated at this time). Mackenzie has suffered this every day of her life for seven years. Imagine that.
Our hope for her is that medical marijuana will be her answer as it has been for other children with this most severe form of epilepsy. She needs this now so her brain can heal itself or “reroute” functions so that she may lead a productive life. Medical marijuana is non-addictive and is used as a food additive; it will not make her feel high as other prescribed medications do.
In his booth, my hair stylist keeps an article about Mackenzie published just last week in the Observer-Dispatch and discusses medical marijuana with his clients. He has been successful in dispelling a lot of the misconceptions of its use — especially addiction and misuse.
Keep these conversations going, get the right information and let the politicians make this happen – break through the bureaucracy so these kids do not suffer anymore.
EDITOR’S NOTE: Mackenzie Kulawy is an 11-year-old New York Mills girl who has a severe form of epilepsy known as Doose syndrome. After she started having seizures every 10 or 15 minutes in April, she had to drop out of school. Many children with severe epilepsy have shown remarkable progress after using medical marijuana. They use a strain that’s taken orally and doesn’t make them high. Mackenzie’s parents know a family in Colorado whose son has the same condition and he hasn’t had a seizure since he started on the medication two years ago. Here’s a closer look at what Mackenzie is going through, written by her grandmother.