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Sister of boy with rare disease selling ornaments to raise funds, awareness

A toddler from Lawton who has a rare disease has been given new hope by an experimental medication and some fundraising work by his sister. (WWMT/Jake Berent)

A toddler from Lawton who has a rare disease has been given new hope by an experimental medication and some fundraising work by his sister.

1-year-old old Russell Cruzan has Mitochondrial DNA Depletion Syndrome No. 13, a gene mutation on the FBXL4 gene, which causes extreme muscle weakness due to a buildup of lactic acid in his muscles and ammonia throughout his body. Russell is fed 24/7 through a tube; he can’t speak, he can’t sit up for very long, and he was given only two to four years to live.

But new medications he’s been put on to help curb his ammonia and lactic acid levels are giving the family new hope, while Russel’s sister Kerri raises money for mitochondrial diseases.

"It was definitely a rocky start to the year.... Russell hospitalized many times for small illnesses. Anything from the common cold to pancreatitis,” said Russell’s mother, Michelle Budnik-Nap. "Last couple of months, he's been really good. We're working on two and a half months hospital free."

Budnik-Nap said Russell has been able to be more physically active and alert since he was put on the medication several months ago.

"He went from being a sleepy baby who slept 20 hours a day, to wanting to engage and interact with his environment and the people around him who love him," Budnik-Nap said.

Russell requires hours of physical therapy and 33 medications every day. His 10-year old sister Kerri has been trying to help out any way she can.

"Once a week I'll grab him and work with him on some things his therapists want him to work on," Kerri said.

In addition to helping care for Russell, Kerri has started making green ribbon Christmas ornaments to sell, in order to raise money for research into mitochondrial diseases. Green is the color used to raise awareness for mitochondrial diseases.

Budnik-Nap said for as much time the family spends with Russell during hospital visits and administering care, the joy he brings them you can’t put a price on.

"You cry for a minute, you brush yourself off, and go back to fighting every day, every day it's a fight for us,” Budnik-Nap said. "You can see, look at this little face. How can you not just do everything you could possibly do to keep him happy and healthy."

If you're interested in purchasing an ornament, you can visit the Facebook page here.

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