One of the hardest things to see is a child fighting an illness. We came across Max's story when we saw this photo of him celebrating 30 days with no seizures. When we heard more about his story, we were so inspired by his bravery and positive outlook he had. We love to use Folks of Letterfolk to pass along the stories that inspire us to all of you, and Max's story is just that!
To start off, tell us the story behind this photo.
Max was diagnosed with atonic and myoclonic seizures on World Epilepsy Day (March 26) in 2016 just before his 5th birthday- oh, the irony. His diagnosis was not expected. Max had dealt with health issues since birth- chronic ear infections, 90% hearing loss (prior to tubes), reshaping helmet, adenoids removed, bronchomalacia, speech delay, etc., etc.- but always had a sunny disposition, an infectious smile and a lover of life.
The week prior to his diagnosis, he seemed off. He had fallen down the stairs, seemed distracted and just 'not himself.' My 'mom gut' nagged at me all week after he fell down the stairs on a Sunday...on Friday he woke up came downstairs and fell straight on his back (locked knees) twice. I immediately called his pediatrician and was instructed to take him to the ER.
Triage ran a number of tests-diabetes, cardiovascular, CT scan, etc. The CT scan showed excess gray matter, which was an indicator of epilepsy. We were admitted and had a 48 hour EEG. Max had several more episodes during his stay and it was determined he had epilepsy. His type of seizures are rare and difficult to treat (and diagnose). There are limited medications he can take that are effective on his seizures...after about 6 months on meds we were at the point that his seizures were increasing and we had almost reached the maximum dosage on the meds, so the Ketogenic diet was recommended.
We began the diet in April 2017. He was hospitalized for 4 days to rid his body of sugar and to start the diet. The Keotgenic diet focuses on burning ketones instead of glucose. They really are not sure why it works, but it does for a large portion of patients. Max's diet is highly controlled. EVERYTHING (all meals and snacks) is weighed and follows a 2:1 ratio of fat to carbohydrates + protein. It is extremely low to virtually no sugars and carbs. The diet is somewhat similar to the Atkins diet (high fat, low carbs and sugar), but highly regulated. We use an app/website (ketodietcalculator.org) to log meals and have a dietician to regulate and approve proportions.
Tell us about Max's personality and what he likes to do.
Max is truly an amazing kid! He takes 14 pills a day and never fights me. He is disciplined on the diet and never cheats. He is genuinely happy. He is the class comedian (I hate to admit it, but he really is funny- just don't tell him!), a gentle soul (he is conscientious that his friends and family are happy and feel loved), enjoys school and LOVES life. He is obsessed with cars (Audi, VW and Jeep are his faves), plays soccer, and loves riding his scooter and listening to music. He worships his older sister, Maddie. Maddie is so patient with Max, and his biggest ally. Max started kindergarten in September and could not wait to start reading and bring a backpack to school.
What has Max taught you and those around him as he fights this battle?
To live in the moment. This is something I struggle with- always looking for things to be perfect and stressing about the 'what ifs.' Max has taught us to slow down. He has taught us to celebrate each day, each moment- whether big or small.
How have those around Max rallied around him in his fight?
Family, friends, teachers, social media family, etc., have been his biggest cheerleaders. Supporting his diet, educating themselves on epilepsy, and accepting what we cannot change...and supporting me and my husband- which is huge.
What is the update on Max? How is he doing with his seizures?
Fingers crossed, but he is doing well! We have increased his calories (he is losing weight on the diet), so he is adjusting to the change. Little changes in the diet can impact the processing, but his ketones are right where they need to be.
We were so touched by Max's story and want to know how we can better support kids with epilepsy.
Awareness. Research is ever evolving. Every new discovery leads us closer to a possible cure. Max will not outgrow his seizures, but my hope is that this car-obsessed boy will be able to be a DRIVING 16-year-old car-obsessed teen.
Lastly, we always like to ask: what is currently up on your letter board?
RESIST