“Kai is always smiling…a true joy!” –Trish Griffith
Born in March of 2014 to parents Ryan and Souchinda, Kai’s entrance into the world was met with hemorrhaging, unexplainable bleeding, and an overall traumatic delivery. At the time, Kai’s bleeding episodes which were eventually managed, did not raise immediate concern for the possibility of hemophilia or other related disorders.
“Kai had a wonderful first year,” describes Trish. So, an alarming development of numerous small hematomas following his first birthday prompted an emergency hospital visit. It is then that doctors officially confirmed Kai had severe hemophilia A. “This is the first bleeding disorder in our family,” Trish explains while detailing her astonishment of the diagnosis, “[so] I spent the week learning a great deal about hemophilia”.
Soon after, doctors decided it was best to have Kai undergo a port implantation to assist in treatment of his severe hemophilia. "He was the hit of the PICU,” Trish details of her jolly grandson’s contagious smile and endearing personality while in the hospital for his procedure. However, four months following Kai’s initial diagnosis and port procedure, a visit to the doctor for a gum bleed determined that Kai had developed an inhibitor.
"Ryan and Souchinda have worked so hard to see that our grandson receives the right treatment and care. Kai is lucky to have such a loving mom and dad!" –Trish Griffith
Kai and his loving parents, Ryan and Souchinda, fortunately live only 1 mile from the hemophilia center in Charlotte, North Carolina where Trish highly praises Kai’s amazing pediatric hemophilia doctor who “fought the insurance company on [her family’s] behalf for coverage, as well as [for] the selection of a home healthcare nurse who worked with other hemophilia patients”. Living nearby the hemophilia center has been a great privilege for Kai since he has developed the inhibitor and has suffered from 2 port infections, one of which almost left him in the hospital over the holiday season. Even so, Kai continues to conquer sever hemophilia A and infuse all of those around him with his triumphant personality and love. “Kai is incredibly blessed”, Trish radiates proudly.
A Grandmother’s Determination
With Kai’s inhibitor and port infections, Trish wanted to help, but living in Knoxville, Tennessee presented a challenge for providing assistance. However, Trish knew what she had to do – she had to help guarantee that Kai is promised better treatment options in the future. She and her friends gathered and discussed several ways to help out, and they decided that the first endeavor would be a contribution to the National Hemophilia Foundation.
Full of confidence and equipped with a soft southern accent, Trish contacted the National Hemophilia Foundation’s development department and politely requested that funds she donates online be allocated towards research for a cure. After a few shared laughs and plenty of reassurances, Trish began to share awe-inspiring stories about Kai’s journey, and voiced her concerns on why funding cure research is so vital…especially from her Gigi perspective.
Within 24 hours of speaking with the Foundation, there was an influx of donations in honor of Kai pouring in. Trish proved to have successfully unleashed her “friend-raising” abilities by soliciting nearly $1,000.00 in research support from her family, friends, and neighbors, all in honor of her little Kai.
Trish’s story is not an unusual one. Like many dedicated grandparents, Trish wanted to help her grandson in all ways possible both now and in the future. However, it is through her ability to encourage others to support research that truly sets her apart.
Encouraging your close network of friends and family all starts with a simple ask and a lot of persistence. Continue to be the voice that helps bring change to those living with bleeding disorders. Your voice – Your Community – Your Cause.