An Unexpected Diagnosis and a Pledge to Give Back
Not long after Evan’s transplant, the Morgans made the decision to become involved with Gift of Life Howie's House as a way of “giving back.”
Evan Morgan’s symptoms first cropped up several years ago. A young, multi-sport athlete, he began having foot and ankle pain that later spread to his knees and hips. His pediatrician chalked it up to normal growing pains and Evan played on.
When the symptoms didn’t go away and Evan suffered several broken bones, his parents took him to an orthopedic specialist. The doctor found several stress fractures and a small tendon tear in his right knee, but otherwise all tests came back normal.
“This was a kid who played well and the other coaches would warn their players to keep an eye on him, but as time went on he lost a lot of his usual energy and stamina,” says Jeff Morgan, Evan’s father. “He also wasn’t eating as much and his color was off. Finally, even though his doctors had cleared him to play, one of his coaches came to us and said, “I don’t know what’s wrong with him but he’s hurt and shouldn’t be playing.’”
During a scheduled doctor’s visit, Evan’s orthopedic physician recommended that he return to his pediatrician for blood tests. The results of those tests turned the Morgan’s life upside down.
“At the pediatrician’s office, on August 20, 2012, the doctor told us to go home, pack a bag and get to the CHOP [Children’s Hospital of Philadelphia] ER right away,” says Debra, Evan’s mother. “The tests showed that his hemoglobin level was extremely low, which means there wasn’t enough oxygen in his blood.”
At CHOP, Evan was put on oxygen and was given blood transfusions to raise his hemoglobin level. He also underwent more tests.
“I remember them doing an ultrasound and spending a lot of time looking at his kidneys,” says Jeff. “They weren’t saying much.”
A shocking diagnosis was soon made – end-stage renal failure, the cause of which is still a mystery. Due to the advanced stage of his disease, a kidney transplant was deemed the only viable treatment option. He was put on nightly peritoneal dialysis treatments at home, and in November 2012 Even’s name was added to the national registry and his wait began for a new kidney.
“Looking back, the symptoms make sense and we now know that many are indicative of renal disease,” says Jeff. “But, at the time, nobody thought to look at his kidneys. The doctors at CHOP couldn’t believe he was able to keep playing sports through all of this.”
Although on dialysis, life was surprisingly normal for Evan while he waited for a transplant. He went to school, practiced with his soccer team and even played basketball that winter. During this time, his family explored the possibility of a living kidney donation through a series of educational appeal letters, but a match couldn’t be found.
During their wait, the Morgans wanted to continue spending time at their remote cabin in the Endless Mountains. But it had no phone, cell service and internet service so doctors advised against staying there, since transplant candidates have to be reachable at all times in case an organ became available.
“I ended up having a phone put in at the cabin and we gave our new number to the hospital team and our families. On the first night of service I was talking to my dad in Georgia and he said, “Don’t worry, you’ll get good news soon,’” says Jeff. “Later that evening the phone rang and it was the hospital telling us that it may have a kidney for Evan.”
On April 2, 2013, Evan received a new kidney and was discharged two weeks later. Other than an initial bout with rejection, he has done well. By June of that year he was back on the soccer field and today has more energy than ever.
Not long after Evan’s transplant, the Morgans made the decision to become involved with Gift of Life Howie’s House as a way of “giving back.” A group from Jeff’s office participated in the Home Cook Heroes program. The family also decided to launch a campaign to raise $25,000 for the house’s Adopt-a-Family program, which helps support families who wouldn’t otherwise be able to afford to stay at the house. Money is primarily being raised through colleagues, friends and family.
“To assist with the Morgan’s campaign, the Gift of Life Howie’s House is providing them with a number of tools to promote it, including a webpage and donation page,” says Sara Cohen, development manager for the Gift of Life Howie’s House. “This is something new for us and something we can offer to other families, groups or organizations who want to raise funds for the house.”
Complementing the Morgan family’s campaign is a separate effort by Evan to raise money through fundraisers at his school. One of his goals is to raise money to purchase a basketball hoop for the enjoyment of those staying at the House.
“The Gift of Life Howie’s House is an amazing place,” says Debra. “It gives families a warm, comfortable place to stay so they don’t have to live in the hospital. The house is also a great place to meet other families who are in the same situation.”
“When you have a successful transplant you realize how important it is to give back in some way,” adds Jeff. “Our goal is to do as much as we can to support the House and the people who stay there.”