Avi Brender, who joined the Mitzvah Clowns program two months after the death of his 11-year-old daughter, Danielle, has embarked on another mission with his wife — to alert families about the genetic disorder that took their child’s life.
Avi and Sharon Brender, residents of Millburn, N.J., have sent 3,000 letters to every elementary school student and teacher in their city about Long QT Syndrome, which effects one in 7,000 people in the United States. The couple reprinted the letter in their temple bulletin, and is establishing a foundation in their daughter’s name.
The letter encourages parents to make sure every child has an electrocardiogram, the only way of detecting Long QT Syndrome, an abnormality of the heart’s electrical system also known as LQTS.
“I want this to be her legacy,” Sharon Brender says of Danielle. “I don’t want to feel that my daughter died in vain.”
She calls the syndrome “a silent killer of children and young adults.”
Danielle collapsed, without warning, on April 15; paramedics could not revive her, and she was pronounced dead at the hospital. Athletic and outgoing, she had apparently been in perfect health.
Subsequent EKGs on the rest of the family found that Avi and two of the remaining four Brender children tested positive for LQTS; they have begun taking beta-blockers.
“This is very treatable,” Sharon Brender says. An EKG, she says, “costs less than the annual dental X-rays parents pay for.” If a child is subject to unexplained fainting, the only symptom — besides sudden death — of LQTS, “The parents have to demand that the child has an EKG.”
Danielle had never fainted.
If a family experiences the sudden death of a child, Brender says, all family members should have an EKG.
“This problem is not well known in the medical community,” she says. LQTS may cause 3,000 to 4,000 sudden deaths in children and young adults in this country each year, according to The Sudden Arrhythmia Death Syndromes Foundation, and has recently been linked to sudden infant death syndrome.
While LQTS has not been identified as a disproportionately Jewish genetic disease, “It’s definitely represented in the Jewish population,” Brender says.
The Brenders have established a Danielle Brender Fund Inc., 44 Main St., Suite 4, Millburn, N.J. 07041. The Brenders’ phone number is (973) 379-9375.