Middleton fourth-grader Ella Farnum has Rett syndrome, a rare genetic disorder

by: SHERWOOD GAZETTE: BARBARA SHERMAN  - Penny Hymes, an instructional assistant at Middleton 'who's way more than that,' according to Beth Farnum, prepares Ella for a mid-morning snack at the school. 

The fourth-graders in Julie Camp’s classroom at Middleton Elementary School never worked as hard on their math lessons as they did the week of April 7-11.

Every morning, the students counted mountains of coins —thousands of pennies, nickels, dimes and quarters, not to mention bills and checks — that were collected from all the classrooms in the school for their “Coins for a Cure” fundraiser.

All the proceeds, which totaled more than $4,500 with more still coming in from local businesses and organizations at the end of the week, were being donated to the International Rett Syndrome Foundation, and the inspiration for the drive was Ella Farnum, who is a student in Camp’s class.

Through her parents, Beth and Bill, Ella tells her story on her website,, recounting how she was born with “all the cute options — dimples, chubby cheeks and TONS of brown hair. Throw in an adorable smile and a strong personality, and you have a recipe for an angel. What (my parents) did not know were the tragic ingredients of this recipe that were lying in wait in my DNA.”

Ella’s initial development seemed normal, although her parents and grandmas started to notice by age 2 that she wasn’t keeping up with her contemporaries as far as talking and motor skills. Ella was started on occupational and physical therapy, and after the family moved to Sherwood, a new round of doctors and evaluations started.

“After many doctors’ visits, an MRI and two LONG evaluations in the autism and neuro-development clinics at Doernbecher, (doctors) finally suggested I get genetic, chromosomal and metabolic testing for various things,” Ella “writes” on her website.

Finally, a DNA test revealed on Dec. 1, 2007, that Ella had Rett syndrome.

“To date, I am the only person in the international genetic database that has this particular ‘genetic mutation,’ she wrote. “My parents wondered: What to do next? What can you do when your dreams of seeing your daughter lead a normal life of tea parties with dolls, soccer games, high school prom, falling in love, going to college, getting married and bringing your grandchildren into the world have just been dashed in an hour?

“What else could we do? We decided to fight! WELCOME TO OUR ARMY!”And thus “Ella’s Page” was created with a link for people to make donations, but that wasn’t the end of the Farnums’ efforts.

“Beth and I came up with the idea of doing a schoolwide fundraiser,” said Camp on Wednesday, April 9, as her students were busy counting piles of coins scattered around the classroom floor. “It took a couple of months to put together. My students wrote speeches and went to all the classrooms to talk about it. Our goal was $2,000, and we almost reached that yesterday.”

by: COURTESY OF BETH FARNUM - Coins for a Cure posters were sent home with Middleton students and also posted all over the school along with a stack of uncounted coins and some collection bags.Each morning, Camp’s students, who were divided into six teams of about four kids each, went around to all the classrooms and collected plastic bags filled with that day’s donations and brought them back to their classroom, where the counting started in earnest.

“The beauty of this is that not only are the kids learning about service, but they are getting math lessons,” Camp said. “They have learned to crunch numbers and fill out bank slips. I call them little accountants. We talked about teamwork and strategized ways to tackle this big counting job.”

After all the money was counted and deposit slips filled out each day, Farnum wheeled the sacks in a red wagon to the school office and then took them to US Bank to be recounted and deposited.

In fact, US Bank had to order more bags for its change machine.

“Beth shoots me the numbers at the end of the day, and we calculate our margin of error,” Camp said. “Monday we were just under 5 percent and Tuesday just under 4 percent. By the end of the week, our goal is to be perfect!

“Today we got a $100 check and five $20 bills. People are being very generous because of Ella. And we have done activities like students pretending they have Rett syndrome so they can only communicate with their eyes. One day they had to use scissors using their non-dominant hand, and another day I gave them a spelling test with nonsense words so they could understand what it is like to have dyslexia.

“They have so much empathy for Ella, and this gives them a picture of the world outside themselves.”

Farnum said she was just “blown away” by the support that came not only from the school but also the entire community.

“We see kids setting up lemonade stands around the city to raise money for Rett syndrome,” she said. “My next-door neighbor’s sister lives in another part of the city, and someone knocked on her door to say they were taking pledges for doing bike laps for Ella. It just brings me to tears to see this amazing community - everyone is so compassionate.

“One dad won his office March Madness pool and is donating 20 percent, and Nike will match anything its employees donate to registered non-profits. The students here are telling their parents how the fundraiser is going. The principal (Jeremiah Patterson) has been so supportive, and every classroom has an age-appropriate disability curriculum.

“It is so amazing to see that the impact of their fundraising means as much to the children in this school as it does to us.”

Camp added, “Every year, we do some sort of cause. I think it’s easy in public education to focus on test scores, but programs like this actually increase test scores because they build confidence in students.”

In addition to feeling good about helping Ella and raising money for research into Rett syndrome, Middleton students earned some concrete rewards. On Monday after the weeklong fundraiser, a “lemonade stand” was set up so every student could enjoy free lemonade; in addition, the class that raised the most money and the class that had the most students participate won balls from Nike, where Bill, who serves on the national board for the International Rett Syndrome Foundation, works.

by: COURTESY OF BETH FARNUM - Ella Farnum (middle row, fifth from left) is surrounded by friends in this photo of Julie Camp's fourth-grade class at Middleton Elementary where she is a student.

“Ella has taught my husband and I more about life than we could have imagined,” said Farnum, who also has two sons — Middleton first-grader Alex and 4-year-old Owen. “The boys are doing an online campaign, and I sent it to Facebook twice, and it raised $3,000.”

And Ella’s fellow students in Camp’s class couldn’t feel any better about raising money to find a cure for Rett syndrome.

Brett said, “I think it is kind of fun to count the money and support a cause. Rett syndrome is a bad disease. Ella can’t talk, but she can communicate with her eyes. Sometimes we read to her, and we can tell she likes it.”

Anika added, “A while back, when we first started learning about doing the fundraiser, Ella’s mom came and showed us what it would be like to have Rett syndrome. It was hard - really, really hard. If we could find a cure, and Ella gets cured, it would be exciting to learn what life is like for Ella when she doesn’t have to deal with Rett syndrome.”

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