A rare SIDS variant claims a Southwest toddler, spurring his grieving parents to found 'Max's Run for a Reason'
By all accounts, Maxwell "Max" Best was a happy, healthy 13-month-old baby, but he fell asleep Dec. 19, 2002 and never woke up. The Linden Hills toddler died of a freakishly rare syndrome called Sudden Unexpected Death in Childhood (SUDC) affecting approximately one of every 110,000 kids his age.
"It's such a mystery for us, " said Max's mother, Jen Best, tearfully. "I just miss my little boy so much."
SUDC is almost identical to Sudden Infant Death Syndrome (SIDS), but much less frequent. SUDC affects children over the age of 1, whose death cannot be explained by autopsy or death-scene investigation.
To raise awareness and money for SUDC research, Jen and Mitch Best put together "Max's Run for a Reason," with the help of friends and local merchants.
The event is Saturday, Nov. 15 at 10 a.m. at Lake Harriet, and will include a 5K run, a 2K family fitness walk, plus games and activities for kids. There will also be a birthday cake and card-making activities to celebrate what would have been Max Best's 2nd birthday on Nov. 17.
Max Best Jen Best said her son was a healthy and happy boy who loved lions and liked to feed the ducks at Lake Harriet. She said aside from a slight fever, Max had never been sick and was a completely normal infant -- a characteristic of SUDC victims.
She said before Max's death, she had never heard of (SUDC), but afterward, she and Mitch Best wanted to help in some way "so other people won't have to go through this.
"I miss him so much every minute, every second, of every day," she said. "Hopefully, this event can help us to raise money and awareness to help solve the mystery on why these perfectly healthy children are dying."
Jen Best said the Hennepin County Medical Center and the county Medical Examiner linked her to an organization called the SUCD Program, which has a parent support network and a research component.
Jen Best said the parent network introduced her to others who have been through a similar experience, and they have helped the grieving process.
Jen Best said she and her husband have participated in the SUDC research program to find a reason for their terrible loss. She said autopsies were able to rule out a lot of possible indicators for Max's death but couldn't find anything to explain it.
Research of SUDC Leading that research, of which Max is a part, is San Diego pathologist Dr. Henry Krous. Along with doctors from around the country, Krous is trying desperately to find a reason or predictor for SUDC.
He said the disease is very frustrating because it's so rare, and one of the hardest things has been finding an adequate number of children to study. So far, Krous said they've studied 47 cases in the past few years and the goal is 100 to constitute a meaningful study.
Krous said another problem is that when a case does turn up, little neurological tissue is examined or preserved -- a problem he's trying to address with medical examiners.
He said extensive study of the brain could hold the key to a reason, and has already yielded more information. Krous said in the study of SIDS -- almost identical to SUDC except for the victim's age -- brain abnormalities have been found in some cases, and more study should be done to figure it out.
Krous said in the late 1980s, California passed a law mandating that babies who had died of SIDS participate in research to help find a cure. Krous said affected parents drove the legislation, and something similar around the country for SUDC could help the research process.
Krous said he admires the Best family, and those like them, for their nobility and bravery in a time of peril. "There is no worse tragedy in the human experience than losing a child unexpectedly," he said. "These parents have turned the tragedy of their precious child's death into something noble to benefit other children."
Tragedy to education Ali Peacha, Jen Best's friend and former college roommate, echoed Krous's admiration for the Bests and said through Max's story alone they've educated people about SUDC research.
Peacha said she and other friends have become frighteningly aware of SUDC through losing Max. She said she's reached a near-paranoia, thinking about SUDC every time she puts her own children to bed.
"It's such a [small] statistic, and you never think it's going to happen to you," Peacha said. "But we're constantly reminded, and it's totally changed lives of people who don't even know [the Bests] that well."
Peacha said because of their assistance to the cause, she and her friends feel something good is coming out of the heartbreaking situation. "This is something we could actually do to help," she said. "It's something good to come out of this tragedy."
Best said through preregistration, they've already raised $15,000 for the SUDC program.
Remembering Max and the Best addition After Max died, Jen Best said her family dedicated a bench as a memorial on Lake Harriet's northeast shore. During holidays and special occasions they visit the bench and think of Max.
She said she went into labor with Max when she was walking around the lake and once he was old enough they would walk there many times a week, making it a very special place for their family to remember him.
Almost a year after the tragedy, Best said she's still in shock. "Time has kind of stood still for us for the past 10 months," Best said.
However, there is a happy twist to the sad story.
The Bests have a new addition to their family, a baby boy named Sam, who was born in late October. "Sam is hope," Jen Best said. "I look at him and smile again."
Best said Sam reminds her a lot of Max, which has been really hard. However, she said she's committed to making sure Sam knows of his big brother. And, although Sam wasn't planned, Best said she has a strange feeling Max had a hand in their joyful addition.
To learn more about Max's Run for a Reason, visit www.maxwellbest.com, and for more information about SUDC and the research program, visit www.sudc.org.