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Local boy raises over $1,200 with lemonade stand for sister with epilepsy

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POCATELLO (KPVI) – Helping others is not something most young boys think about, but for Noah Fernandez of Pocatello, helping others is a daily practice.

Noah set up a lemonade stand in his front yard on Saturday to help his little sister, Josie, who has a rare form of epilepsy. Friends, family, co-workers and even nurses who helped Josie in the past stopped by to show their support, and the result was unexpected.

Noah’s efforts raised more than $1,200.

“This is huge,” Jenny Park, Noah’s mom, says. “Originally, we thought it would just be a little lemonade stand … It’s been really wonderful to see people come out and support Josie as well as other people with epilepsy.”

RELATED | His sister has a rare form of epilepsy, so he’s setting up a lemonade stand to raise money

Josie has a condition called malignant migrating partial seizures of infancy or MMPSI. According to Genetics Home Reference, those who have it often experience recurring seizures within a few weeks of birth. The seizures occur in certain regions of the brain and it usually results in developmental delays for the recipient.

The cause of MMPSI isn’t entirely clear and researchers are still trying to determine how to treat it. From what the family knows, Josie has a KCNT1 gene mutation which results in potassium flowing at an excessive rate through brain cell membranes.

Finding the right treatment or prescription for Josie has been challenging. Noah’s father, Jordan, says they’ve gone through at least 15 different treatments — some work and some don’t.

“It’s definitely been tough,” says Jordan. “It was an eye-opener. What we’ve tried to do … is learn as much as we can about it.”

They say they have a good team that works with them and they also do their part to help Josie whenever they can.

“As much as it’s been hard, she’s a blessing. She gives out as much love as she gets and believe me she gets a lot,” Jordan said with a smile on his face.

Jordan says the idea for the lemonade stand was all Noah’s and the money he raised will go towards clinical research of the disease.

“He’s always wanted to do something for his sister,” said Jordan. “It was actually his idea to come up with a fundraiser for epilepsy.”

Despite his sister’s condition, Noah says he still sees Josie as his baby sister and loves to cuddle, play toys and watch shows with her.

“I really love her,” Noah says. “She goes through a lot of hard times but she’s still happy.”

If there were any words of wisdom that Noah would offer to others dealing with epilepsy in some aspect, it’s this,

“Be brave, be strong and don’t give up.”