Showing signs of generalized edema, or swelling throughout the body caused by fluid in tissue, 14-month-old Ramonie Smith began her childhood life with a disease that was taller than her. At 20-months-old, Ramonie was diagnosed with focal segment glomerulosclerosis or FSGS, a rare immune-system disorder that affected her kidneys. The cause of this disease is unknown as well as its cure.
The illness made Ramonie more vulnerable to significant protein loss, excessive fluid retention and infections, despite her various stays in the hospital.
“At a point in time, Ramonie was carrying an extra seven pounds of fluid on her body,” said the child’s grandmother, Brenda Sharpe.
With the medical odds against Ramonie, time was not on her side and physicians had to think and act quickly. If the fluid was taken out of her too slowly or quickly, it could be fatal.
Over the next couple of months, Ramonie would make frequent visits to the hospital. At age 3, her kidneys began to fail and dialysis was required to keep her alive. She began the body fluid cleansing regimen at home seven days a week for eight hours a day, until a kidney donor was found and a transplant operation was hurriedly arranged.
“The worst part of being sick was being on that machine,” said Ramonie.
On Oct. 22, 2007, Ramonie would finally get a second chance; Riley Children’s Hospital notified her that a kidney had become available. She received a cadaver organ, which is an organ that has been dedicated to scientific study, the next day after having only been on the transplant waiting list for three weeks.
The surgery went well. However, Ramonie’s medical advisors warned her that the recovery process of transplant surgery is never predicable. The body may accept the transplant, they said, but in other cases reject the new organ.
Just three days after her surgery, Ramonie’s body began to attack the donor organ and the symptoms of her disease returned. Doctors started aggressive blood transfusion therapy. If the treatments didn’t work, the kidney could be lost and Ramonie’s chances for a successful transplant would be slim.
Nevertheless, the medical team at Riley hospital was able to successfully navigate the child through the crisis.
Dr. William Goggins is my “hero because he got me off that machine,” said Ramonie, who is now 8.
The former Riley Kid is now apart of the legacy of Children’s Miracle Network, an international non-profit organization that raises money for more than 170 children’s hospitals, including Riley. On May 20, her 8th birthday, Ramonie was introduced as Riley Children’s Foundation and Wal-Mart Super Center’s Indiana Children’s Miracle Network Champion. She was chosen because of her astonishing medical story.
As part of being a CMN champion, Ramonie and ambassadors from the other 49 states received a trip to Washington, D.C., and got a chance to meet President Barack Obama.
“When (Obama) walked into the room, (Ramonie’s) face just lit up and her eyes got really big,” says Melissa Smith-Jones, Ramonie’s mother. “President Obama shook both of Ramonie’s hands and she refused to wash them or let anyone touch them after he had.”
She also met Miss America, Caressa Cameron, and American Idol star David Archuleta. Ramonie said that she was “treated like a queen” on her trip to D.C.
Her honor of being a poster child won’t end there. In November, Ramonie and her family will travel, along with the other CMN ambassadors, to Disney World in Orlando, Fla.
Now that her disease is in remission, Ramonie and her family are hoping and praying they can give hope back to Riley and, most of all, other families facing similar challenges.
“Riley staff, they laugh with you, cry with you, support you during your triumph; they make you feel all warm and fuzzy inside and go above and beyond to love your family and your child,” said Smith-Jones, and for this feeling, the family is thankful. They have spoken at multiple fundraisers and established a Kids Caring and Sharing program at Ramonie’s school, Monument Lighthouse Charter School.
Although Ramonie and family do not know who the donor of the kidney is, they would love nothing more than to express their gratitude; to send the family photos of Ramonie and what she has accomplished thus far, thanks the donor’s generosity.
For more information, call Riley Children’s Foundation at (317) 634-4474 or visit RileyKids.org.