5-year-old takes respite in Naperville during wait for kidney donor

Taking care of Ella
5-year-old takes respite in Naperville during wait for kidney donor
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April 28, 2010
By ANGELA BENDER For Sun-Times Media

In November 2007, 3-year-old Ella Hafenrichter went to her pediatrician for a routine well visit. Her urinalysis indicated that she had protein in her urine. A year and a half after her diagnosis, various courses of treatment and ultimately a donor kidney, Ella is recovering. But she and her family, including mom Michelle and dad Everett, expect a lifetime of challenges, both physically and monetarily, related to her kidney disease.

Ella was living in Albuquerque, N.M., with her family when she was diagnosed with focal segmented glumerulosclerosis, an aggressive kidney disease that usually leads to kidney failure. In an attempt to save her kidneys, Ella endured aggressive chemotherapy. But it failed to slow the progression of her disease, and by fall 2009, Ella and her family were preparing for removal of her kidneys and a transplant.
» Click to enlarge image
Moments after surgeons told Ella Hafenrichter and her family that they had found a kidney match, the family realized the transplant was a go. Dr. Anton Skaro (from left, surgeon), Kevin Connor (uncle), Traci Furbee (aunt), Michelle Hafenrichter (mom), Ella, Everett Hafenrichter (dad) and Dr. Riccardo Superina (surgeon).
(Submitted/Traci Furbee)

AT A GLANCE

April is National Donate Life Month: Visit organdonor.gov

Eagles for Ella Fundraiser

When: May 8

Where: Fox Bend Golf Course on Route 34 in Oswego

What: Shotgun scramble, dinner, silent auction and raffle

Call: Coordinator Traci Furbee at 630-995-3378

To register online or make a donation: cotaforellah.com
Temporary home
In December, Ella and her parents, who have extended family in Naperville, including Michelle's sister, traveled to Chicago for a transplant consultation at Children's Memorial Hospital. What they thought was going to be a weeklong visit to the area turned into a stay of more than four months so far.

"They (the doctors) said 'You're not going anywhere,'" said Michelle's sister, Traci Furbee. "She's so severe she needs to start dialysis."

So the Hafenrichters prepared for an indefinite stay. For five weeks, they lived with Furbee and her family. But then the Hafenrichters' great aunt and uncle, who have a home in downtown Naperville but winter elsewhere, offered their home to the family. It worked perfectly, because it was five minutes from Furbee's home and is close to the highway.

Despite several friends and family members who volunteered to be donors, no one was a perfect match for Ella. But, in the middle of the night March 24, the Hafenrichters received a call that a deceased donor kidney was available for Ella. On the morning of March 25, as Everett, who had been traveling back and forth from New Mexico while the rest of the family stayed in Naperville, raced back to Chicago, Ella received her new kidney.

"Everything seemed to happen in dramatic fashion," Furbee said.
Paying for prognosis
And, while Ella's prognosis is good, kidney disease is lifelong. According to Furbee, Ella will probably require one or two more transplants in her lifetime. The Hafenrichters' insurance covers much of the cost, but they still have many expenses such as co-pays, deductibles and trips to Chicago. Also, as Ella gets older and has her own job, there is no guarantee what type of health coverage she will have. She will continue to have the expense of anti-rejection medications for the rest of her life.

Chicago's Organ Transplant Association, a national charity dedicated to helping communities raise funds for transplant-needy patients, has estimated that the Hafenrichters will need $60,000 to cover Ella's lifetime expenses related to her transplant. COTA also provides resources to help the Hafenrichters raise and manage the money. Furbee and a committee of friends and family members have arranged a variety of fundraisers on Ella's behalf including, "Eagles for Ella," a shotgun scramble May 8 at the Fox Bend Golf Course in Oswego.

For now Ella, who was recently released from the hospital, but will remain in Naperville at least until mid-May, hopes for life to return to normal.

Ella recently told her dad, "(I hope and pray) for my kidney to keep working good, and for all the other kids at the hospital to get better."

http://www.suburbanchicagonews.com/napervillesun/lifestyles/2207440,6_5_NA28_ELLA_S1-100428.article