Twins Joe and Alex Griffin were born 5-weeks early, and after a short stay at Nationwide Children’s Hospital, both boys were sent home to start their lives bustling with the love and energy of parents Heather and Chuck, two older brothers, a dog and a handful of outside cats.

For two years, everything seemed fine, but while Joe was thriving, Alex’s mother noticed that he wasn’t feeling well, battling persistent stomach problems and puffy eyes. At first Heather thought they were dealing with allergies, and she tried changing laundry detergents and Alex’s diet. But as Alex worsened, tests revealed he had a rare kidney disorder called nephrotic syndrome. The disease results in severe protein loss by the kidneys and can cause a cascade of health issues ranging from fluid build-up and swelling to blood clots to a weakened immune system and risk for life-threatening infections.

Typical treatment for nephrotic syndrome includes high-dose steroids, but Alex did not respond to this traditional therapy. As a result, doctors had to treat Alex’s nephrotic syndrome with second and third line medications. Over a two year period, Alex was hospitalized 18 times. Led by nephrologist Dr. John David Spencer, Alex’s medical team tried a variety of treatments including plasmapheresis, a process similar to dialysis that removes fluid from the bloodstream and replaces it with fluid high in protein.  The plasmapheresis seemed to put the disease into remission briefly, but when it returned, Alex underwent several rounds of a medication sometimes used for chemotherapy to try to stop his body’s unrelenting attack on his kidneys. The treatment helped. Recent blood tests have revealed that Alex’s disease is finally in partial remission.

“I’ve never met another doctor like Dr. Spencer who will sit down with you and explain everything. Plus, they trust my opinion if I think Alex needs something,” says Heather. “I suppose it’s bad that everyone at the hospital knows us by name, but everyone adores Alex. It’s so much easier when the nurses are more than just caregivers, but friends.”

Alex, who is now six, is being home schooled to help protect his fragile immune system, but he’s hoping he will return to school soon. He recently received a Mic-Key button in his abdomen, which allows his parents to give him as many as 17 daily medicines and supplements directly into his body. Described as a ‘brave little boy,’ Alex has only about 30% of function remaining in both kidneys, and still suffers from daily nausea and weakness. Throughout it all, he is surrounded by a family does everything they can to keep him happy and distracted.

“There’s a special bond between Alex and each of his brothers. Caleb reads to him every day. Nick play-fights with him. His twin Joe will rub Alex’s back,” says Heather. “Even Sassy the beagle won’t leave Alex’s side when he’s feeling sick.”

It’s a support system that extends well beyond the family’s home and into the community. Friends and family have coordinated several local benefits to help the family, including a motorcycle ride by members of a local American Legion who gave Alex an honorary leather riding vest. The Griffin’s also “paid it forward,” holding a T-shirt sale to raise more than $700 to support nephrology research at Nationwide Children’s. This money was used to create the Alex Griffin research scholarship – awarded to a nephrology trainee to support his/her nephrology research.

“While we can’t change his diagnosis, everyone has worked together to provide Alex with the best possible care,” says his mother.  “We’re in good hands, and even if Alex has to go back in to the hospital, we still have a lot to celebrate.”

http://nchflutter.wpengine.com/wp-content/uploads/2015/10/Alex-Griffin.jpg

• Name: Alex G.Alex Griffin
• Condition(s): Nephrotic Syndrome
• Age at Treatment: 2 years
• Age Today: 09/19/200815 Years

Twins Joe and Alex Griffin were born 5-weeks early, and after a short stay at Nationwide Children’s Hospital, both boys were sent home to start their lives bustling with the love and energy of parents Heather and Chuck, two older brothers, a dog and a handful of outside cats.

For two years, everything seemed fine, but while Joe was thriving, Alex’s mother noticed that he wasn’t feeling well, battling persistent stomach problems and puffy eyes. At first Heather thought they were dealing with allergies, and she tried changing laundry detergents and Alex’s diet. But as Alex worsened, tests revealed he had a rare kidney disorder called nephrotic syndrome. The disease results in severe protein loss by the kidneys and can cause a cascade of health issues ranging from fluid build-up and swelling to blood clots to a weakened immune system and risk for life-threatening infections.

Typical treatment for nephrotic syndrome includes high-dose steroids, but Alex did not respond to this traditional therapy. As a result, doctors had to treat Alex’s nephrotic syndrome with second and third line medications. Over a two year period, Alex was hospitalized 18 times. Led by nephrologist Dr. John David Spencer, Alex’s medical team tried a variety of treatments including plasmapheresis, a process similar to dialysis that removes fluid from the bloodstream and replaces it with fluid high in protein.  The plasmapheresis seemed to put the disease into remission briefly, but when it returned, Alex underwent several rounds of a medication sometimes used for chemotherapy to try to stop his body’s unrelenting attack on his kidneys. The treatment helped. Recent blood tests have revealed that Alex’s disease is finally in partial remission.

“I’ve never met another doctor like Dr. Spencer who will sit down with you and explain everything. Plus, they trust my opinion if I think Alex needs something,” says Heather. “I suppose it’s bad that everyone at the hospital knows us by name, but everyone adores Alex. It’s so much easier when the nurses are more than just caregivers, but friends.”

Alex, who is now six, is being home schooled to help protect his fragile immune system, but he’s hoping he will return to school soon. He recently received a Mic-Key button in his abdomen, which allows his parents to give him as many as 17 daily medicines and supplements directly into his body. Described as a ‘brave little boy,’ Alex has only about 30% of function remaining in both kidneys, and still suffers from daily nausea and weakness. Throughout it all, he is surrounded by a family does everything they can to keep him happy and distracted.

“There’s a special bond between Alex and each of his brothers. Caleb reads to him every day. Nick play-fights with him. His twin Joe will rub Alex’s back,” says Heather. “Even Sassy the beagle won’t leave Alex’s side when he’s feeling sick.”

It’s a support system that extends well beyond the family’s home and into the community. Friends and family have coordinated several local benefits to help the family, including a motorcycle ride by members of a local American Legion who gave Alex an honorary leather riding vest. The Griffin’s also “paid it forward,” holding a T-shirt sale to raise more than $700 to support nephrology research at Nationwide Children’s. This money was used to create the Alex Griffin research scholarship – awarded to a nephrology trainee to support his/her nephrology research.

“While we can’t change his diagnosis, everyone has worked together to provide Alex with the best possible care,” says his mother.  “We’re in good hands, and even if Alex has to go back in to the hospital, we still have a lot to celebrate.”