A second chance at life

July 24 is the nationally recognized Cousins’ Day in which cousins are encouraged to reach out and celebrate their connectedness with one another.

Ryan and Timmy Isom have much to celebrate, and it’s not just each other.

“The fact that two cousins needed a kidney transplant took our families by surprise, but both Isom boys receiving their new kidneys within six months of each other was truly a miracle for all of us to celebrate,” Brandi Evans said, mother of Timmy Isom and aunt of Ryan Isom.

Ryan, 5, and Timmy, 20, both received new kidneys and a second chance at life in 2011.

Timmy was born in 1993. At six weeks old, he was diagnosed with renal dysplasia, which is an abnormality of development within the kidneys. Doctors decided they would monitor his condition rather than take action and make him go through surgery at such a young age.

“Renal dysplasia means his kidneys were too small,” Evans said. “When he was little it didn’t affect him as much because he was still so small, but when he hit his growth spurt and started going through puberty his kidneys couldn’t keep up.”

At age 13, Timmy’s kidney’s began failing and he started taking medication to preserve the kidney functions that remained. By March 2010, Timmy’s kidneys started deteriorating and at the age of 16 he began dialysis 8 hours a day and was added to the national transplant list.

“I was taking 55 to 60 pills a day depending on the day,” Timmy said. “I wasn’t able to do the things normal kids did.”

In 2008, Timmy’s cousin, Ryan, was born six weeks early. Ryan’s parents, Stacey and Tim Isom, were told at their 20th-week ultrasound that their baby was diagnosed with PUV, a blockage between the bladder and urethra.

“It was very shocking because I had never heard of it. You go in to get your ultrasound, expecting to hear if it’s a boy or a girl, and when they told us, I was a wreck. I just didn’t know enough about the problem and I didn’t know what his future held,” Stacey said.

Doctors attempted to fix his kidneys in utero, but the damage had already been done. When Ryan was born, the PUV had caused such severe damage that his kidneys were only functioning at roughly 3 to 5 percent.

Ryan required life-saving dialysis when he was just eight days old.

“He spent the first 61 days of his life at Riley Hospital,” Stacey said. “Then he came home and did dialysis every day for three and a half years.”

Because of Ryan’s small size, he was not eligible for a kidney transplant until he reached 25 pounds, which took all of the three and a half years that he was on dialysis. A child born without this problem would typically reach 20 pounds by their first birthday.

During the spring of 2008, a Riley Hospital for Children social worker gave Ryan’s family information about the COTA.

“We were lucky because we got involved with COTA before Ryan was eligible for the transplant so we had time to raise money prior,” Stacey said.

As soon as Stacey contacted the organization she said she began to feel relieved. She said she was finally able to focus on just her son and the care he needed.

COTA is a national charity based in Bloomington, which is dedicated to organizing and guiding families and communities in raising funds for transplant-needy patients.
COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list because of lack of funds.

“COTA has been a lifesaver for our families,” Stacey said in a press release from COTA. “COTA gave us hope during our darkest days of illness while bills were piling up. When we needed support and guidance the most, COTA was there for us.”

Timmy’s mother, Evans, also began feeling overwhelmed with financial aspects for the impending transplant turned to Stacey for advice and support. She immediately recommended COTA to Evans.

Stacey explained the organization would help cover expenses not covered by insurance such as mileage for the 100-mile round-trip visit to the dialysis center the families would have to make. They would also help cover co-pays and lodging for Evans during Timmy’s hospital stays.

Evans said she contacted COTA with the hopes of receiving help like Ryan’s family did.

“Stacey told me about the organization and I immediately got involved,” Evans said. “We both did. I went to her son’s fundraising events and she went to mine. Our families bonded because of what we had all been through.”

Evans explained fundraising is an exhausting venture because you have to have multiple events in order to raise enough money, but that it was a necessary process.
COTA started working with both families to support and guide them with the necessary measures to create a successful fundraising campaign.

Timmy’s fundraising goal was $50,000. They raised $40,000. Ryan’s fundraising goal was $65,000 and they ultimately raised $67,000 in little more than a year.

“It was a relief because Ryan being born six weeks early was a half a million dollars expense,” Stacey said. “I had a wonderful group of volunteers and COTA really helped us financially.”

Once Ryan had finally reached his goal weight of 25 pounds, the entire family went through the testing process to see if they were eligible to donate their kidneys. Everyone was ruled out as a donor.

“Ryan has an o-positive blood type, which is the universal donor, but not the universal recipient,” she said.

At that point, Ryan was also placed on the national donor list.

Finally, in 2011 both of the Isom boys were contacted and told them they had found kidneys for them.

Timmy received his kidney first, on April 26, 2011, and Ryan followed on Aug. 21, 2011. Both transplants were successful.

“I remember being woken up post-op and feeling instantly better,” Timmy said. “Obviously, the pains of surgery were there, but my body didn’t ache in the same ways it used to, I felt healthier. I was ready to get up and walk around, but I wasn’t allowed.”
Since the transplant, Ryan has grown seven inches and is continuing to gain weight. Stacey said he is ready to start kindergarten this fall and he loves playing golf with his dad and older brother.

“Just looking at him today you would never believe he has gone through as much as he has,” Stacey said.

Timmy has since written the family of his kidney transplant donor, whom he only knows as a 20-year-old male. In the letter, he thanked the family while also explaining to them how much the kidney improved his life.

“The chances of an organ you are no longer using saving the life of someone else is incredible,” Timmy said. “It’s the ultimate act of charity and a final gift.”

The two boys’ stories of struggle have brought the two families closer together and they were able to find a silver lining in all of it.

“I definitely feel much, much closer to Ryan and we have a bond that no one else will understand, but I also feel closer to my whole family too,” Timmy said. “They all came together and went above and beyond what I thought they would be able to do.”