After Great Loss, a Mother Finds a Way Forward

With every family she helps check-in, every time she turns on the welcome video, Kristin Akin smiles and thinks of a time when her own family found comfort and care with the help of Ronald McDonald House Charities during the most devastating and trying time in her life.

In 2007, at just 10 weeks old, her son, Andrew, nearly died from liver failure. Doctors soon revealed a rare immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH) was to blame and a bone marrow transplant would be needed to save his life.

Soon after, Andrew underwent his first bone marrow transplant from umbilical cord cells in December 2007 at St. Louis Children’s Hospital. Unfortunately, this transplant did not cure Andrew, so doctors soon tried a second bone marrow transplant using cells from an anonymous donor.

The second transplant failed to cure Andrew, and the family immediately transferred his care to Cincinnati Children’s Hospital Medical Center to be under the care of a world renowned HLH expert.

Once at the hospital, Andrew underwent his third bone marrow transplant and additional tests revealed a rare genetic mutation caused his HLH. When doctors recommended testing Kristin and Justin’s four-year-old for the same genetic defect, the couple hesitated — Matthew was a happy, healthy toddler. How could he also have this devastating disease?

“Just when we thought things couldn’t get worse, we were told that Matthew also carried the mutation,” Kristin said. “It would be a matter of time before he was exposed to a virus that would trigger HLH.”

Doctors recommended Matthew undergo a bone marrow transplant immediately, despite still appearing healthy. With only one bone marrow match in the donor database, doctors wanted to make sure the bone marrow cells were given to Matthew while available.

Then, out of nowhere, Andrew developed severe pulmonary complications and he lost his battle on September 5, 2009,  just two weeks after his brother underwent his bone marrow transplant.

Matthew’s journey continued to be even more challenging and difficult than his brother’s. After eight long, grueling months, Matthew also lost his battle on May 1, 2010.

Before Matthew and Andrew got sick, when Kristin was a stay-at-home mother, she volunteered at the West Pine location of the Ronald McDonald House Charities in St. Louis. When Andrew became ill, Kristin had to temporarily step away from her volunteer role to become a full-time nurse to her children.

Kristin never wanted to be too far from Andrew’s side while he received treatment at St. Louis Children’s Hospital. While at the hospital she used the Ronald McDonald Family Room to shower or grab a snack before rushing back to be back with Andrew.

“The Ronald McDonald Family Room is like a little calming haven within the hospital,” Kristin said. Kristin and her husband Justin soon formed the Matthew and Andrew Akin Foundation to provide resources for children with HLH and their families going through the bone marrow transplant process.

The Foundation is currently raising money to build a 55-unit long-term apartment building adjacent to Cincinnati Children’s Hospital, similar to the long-term apartments at the West Pine Ronald McDonald House in St. Louis.

During the transplant process, a child is susceptible to infection because of an impaired immune system and often needs to stay close to the hospital six months or more to receive out-patient treatment. Many times, these children cannot stay in a typical Ronald McDonald House room because of the community-like environment.

After her sons passed away, Kristin returned as a House volunteer for the West County Ronald McDonald House — empathizing with the mothers and fathers who turn to the Ronald McDonald House during one of the scariest times in their lives. She enjoys being able to help welcome the families and make them feel at home.

In September, the couple adopted a baby boy named William who helps the couple continue their lives and gives them the strength to continue to not only raise funds for HLH awareness and research, but to also make sure families receiving transplants at Cincinnati Children’s have a safe place to stay after surgery.

“I think Will saved my life,” Kristin said. “We’ve lost two wonderful little boys that will be missed forever. Our mission now is to help the families that will have to deal with this horrible disease in the future.”
 

This story originally appeared in the Spring/Summer edition of Heartbeat, published by the Ronald McDonald House Charities of Metro St. Louis and is reprinted here with permission.

The Ronald McDonald House provides a “home away from home” for families of seriously ill children traveling to St. Louis for medical treatment.  The facility has grown from an eight-bedroom facility in 1981, to now include three houses, eight extended-stay apartments, and three Ronald McDonald Family Rooms – one at St. John’s Mercy Children’s Hospital, one at St. Louis Children’s Hospital, and one at SSM Cardinal Glennon Children’s Medical Center.  The Ronald McDonald House provides comfort, care and lodging for up to 59 families every day of the year. For more information, visit www.rmhcstl.com. To learn more about the Matthew and Andrew Akin Foundation, visit www.matthewandandrew.org