Duo helping sick youth with fundraiser on Friday

Two Westfield girls are working hard to impact the lives of two sick local girls. Olivia Johnson, 10, and Peighton Isley, 9, are hosting a fundraiser called the H&M Event to benefit Henley Romine of Westfield, 3, and Morgan Oisten of Noblesville, 4.

For the last two summers, Olivia and Peighton have had a lemonade stand in the neighborhood and have donated the money to Morgan and Henley.

“They wanted to do something bigger and reach more people,” said Emily Johnson, Olivia’s mother.

Olivia and Peighton said as these two little girls are fighting to improve their health, they are having this fundraiser to help their families with the medical costs and to raise awareness for their illnesses.  On Friday, the H&M event will feature a scavenger hunt around the Oak Manor neighborhood in Westfield along with a 1-mile walk and a 2-mile run on the trail.

The event, stationed at the Oak Manor Clubhouse and Pool parking lot, kicks off at 5 p.m. with the scavenger hunt check-in, the race will begin at 5:15 p.m. The run/walk check-in begins at 5:45 p.m. followed by the start at 6 p.m.

Costs are $5 per person or $10 a family for the scavenger hunt or run/walk with all proceeds donated to NOMID Alliance and the family of Henley Hazel Romine. A barbecue pork sandwich dinner will be provided to all participants by Stuart’s Steakhouse. The girls’ famous lemonade stand and a craft table will be available as well.

“It takes one or two people like them to make a difference,” said Peighton’s mother, Kelly Isley. “They’ve found their passion. They’ve got big hearts.”

Morgan has Neonatal Onset Multisystem Inflammatory Disease, a rare disease that only occurs in one in a million people. She was diagnosed at 8 months old (second youngest ever) and started an injection of medicine called Kineret at 10 months to help with the increased spinal fluid and many other things going on inside her body.

Mike Oisten said there is only one other person in Indiana who also has the same disease as his daughter. NOMID can cause many horrible side effects or even death if not treated properly.

“We go to the National Institutes of Health for research and development twice a year as the discovery of the disease is not very old and they are still pecking away as to what/where/why and how this happens,” he said.

Henley was diagnosed with stage IV high risk Neuroblastoma in August 2010.

“She was 18 months old at the time. She had a very small percentage chance of survival. She is now three and a half and has had intensive treatments,” said Grant Romine, Henley’s father. “We have had three relapses, spent over a year traveling (nearly living) to New York and are currently treating brain tumors through a trial in Grand Rapids, Mich. We aren’t sure what tomorrow will bring so that’s why we take it one day at a time, trusting God and bee-lieving in Henley.”

For more information, contact Kelly Isley at 523-5634 or Emily Johnson at 376-9035.