No parent wants to be on a first-name basis with their local 9-1-1 operators. But for Mayra Melka-Baldwin, that’s what it takes to care for her son, Magnus.
In Magnus’s first year of life, he was transported to the hospital by ambulance at least 15 times. He had his first seizure at five months old, followed by another less than a month later. After months of testing, doctors discovered a mutation in Magnus’s DNA, which caused a rare type of epilepsy called Dravet syndrome.
“From that point on, our lives drastically changed,” Mayra says.
That diagnosis came 11 years ago. And every moment of those 11 years has been filled with uncertainty, worry, and unknowns.
Dravet syndrome can cause a host of challenges that impact Magnus’s life every day through behavioral, developmental, movement, and sensory issues. His body can’t regulate its own temperature. Lights, colors, patterns, and excitement can trigger seizures.
“Magnus needs constant care; there’s no day to let your guard down,” Mayra says. “It can be very isolating. Your living becomes so minimized and solely focused around caring for your child.”
In the midst of this isolation, Magnus and his family felt the roots of love and hope begin to grow. Magnus found out he would receive a wish from Make-A-Wish® Alaska and Washington and it gave his family something to look forward to that wasn’t steeped in hospital visits and medications.
Magnus wished to be a landscaper, to fulfill his fascination with leaf blowers and rocks and watering. As his dream was nurtured, both Magnus and his wish began to thrive. For one day, seizures took a back burner as Magnus met with the grounds crew at T-Mobile Park and botanists at Amazon Spheres. He experienced every aspect of what it takes to be a landscaper.
Through his wish, Magnus had the room to blossom. And long after his wish was granted, Magnus and his family continue to draw from that place in their memories.
These days, Magnus has seizures almost nightly. They can last from 5 minutes to 5 hours, often requiring rescue medication or a trip to the ER. “You learn to become a doctor, a caregiver, and wear so many hats,” Mayra says. “You fight the systems, you advocate with doctors, you challenge people … it becomes survival.”
If a child you loved was fighting a critical illness, like Magnus, what would you do? How far would you go to help give them back a piece of their childhood?
Make-A-Wish® Alaska and Washington needs your help to grant wishes for kids like Magnus. Join Make-A-Wish at Wish Night® Gala & Auction on March 21 to hear more of Magnus’s story and the day he wished to be a landscaper.