Over 11 days in November, Wollert father Steve Trowbridge will run 700 kilometres from Adelaide to Melbourne to raise money for a cause close to his heart.
His four-year-old son, Levi, has a rare genetic condition called KCNQ2 Early Infantile Encephalopathy.
The condition is an alteration of the genes and effects Levi in all aspects of his life.
His mum, Karsha Trowbridge said KCNQ2 effects Levi’s salt cells in his brain, which causes seizures to occur.
She said the condition severe learning delays in all areas of development and currently has no known cure.
Levi is one of about 1000 kids worldwide to be diagnosed with KCNQ2.
Karsha said Levi was rushed to the Royal Children’s Hospital at three days old after he became stiff and held his breath for about 15 seconds.
“The next day we were rushed to NICU as Levi was having multiple seizures that were lengthening in duration each time lasting as long as five minutes, every one resulting in Levi not breathing,” she said.
“At seven days old Levi was placed under a video camera, wired up to a brain wave monitor and placed under heaters with a breathing tube. Levi always required two nurses for just himself as his fight had just gotten tremendously harder.
“Steve and I weren’t sure what to expect as our first baby was essentially on life support. We honestly weren’t sure if he would make it as he was so little and had undergone so much trauma already through multiple tests and seizure activity. Every seizure felt like it lasted a lifetime and seemed like we held our breath with Levi just praying for the seizure to be over, to just hope he took a breath.
“In Levi’s short life, he has faced countless challenges and many hospital trips making it our second home, but Levi’s determination and resilience continues to push Steve and I as parents to advocate for him with more passion than ever.”
Steve’s run from Adelaide to Melbourne will be the culmination of a five-month fundraising campaign for the KCNQ2 Foundation in the hope of finding a cure to create a better future for those who have been diagnosed with this rare condition.
Steve’s run will span 11 days days to reflect the amount of time Levi spent in the NICU, and he will cover about 65 kms per day – the number of seizures Levi had during his three-and-a-half-week stay at the Royal Children’s Hospital.
“This will be one of the toughest things I will do in my life (both physically and mentally), but it’s nothing compared to what Levi has endured in his short life to date,” Steve said.
Karsha, Steve, Levi and brother Beau, 2, hope to raise $40,000 for the foundation.
Karsha said the family conducts annual fundraisers for the foundation, raising close to $60,000 over the years.
“We don’t know what the future can hold for Levi or others diagnosed with KCNQ2, but we know that we will do everything in our power to create change and generate much needed funding to a cause that is close to our hearts,” she said.
“We want to raise as many funds and exposure for awareness as possible as we continue to rally and pray to find a cure for all those diagnosed.
“We don’t want Levi to be defined by the unknown of KCNQ2 or the number of ‘one in 1000 in the world’. We see Levi as our one in a million-miracle boy, our shooting star in the night sky and hope for a better future to find a cure.”
To support the Trowbridge family’s fundraising efforts, visit: shorturl.at/94ujb
