Fund helps patients with heart defects
Malley High, 12, and Henry Weathers, 11, have been friends since before they could walk or talk. Their friendship, arguably, could have started in the pediatric intensive care unit at the OU Medical Center during the first years of their lives.
Both were born with heart defects. Malley was diagnosed with tetralogy of fallot and Henry has hypoplastic left heart syndrome.
Between the two of them, about 30 surgeries have been performed in relation to their defects, said Henry’s mother, Erin Taylor.
Malley’s mother, Pattye High, reached out to Taylor as they traveled to St. Louis for Henry’s heart transplant.
Even though heart defects are the most common birth defect in Oklahoma, the two women felt that it should not be so difficult for families dealing with them.
“When I came back I said, ‘We have to make this easier for other families, it should not be this hard,’ ” Taylor said. “Pattye said to me, ‘I’ve been thinking the same thing the whole time.’ ”
That thought was what created the Malley and Henry Fund in 2008.
High and Taylor work with 12 to 20 families a year, providing direct financial support, visiting them in the hospital and answering questions that may arise in the stressful period of learning how to deal with children diagnosed with a heart defect.
“You have the right to grieve the loss of your child’s good health,” Taylor said. “You have the right to get support for those big, emotional needs.”
There is currently a limited amount of pediatric cardiothoracic surgeons in Oklahoma, and many families have to travel out of state for care. Taylor said those families need a lot of financial and emotional support.
The fund is supported by donations and fundraisers put on throughout the year. Much of the fundraising is done by writing letters and telling stories, Taylor said.
At Christmastime, they told the story of a girl named Kate who was having heart surgery in Dallas. The morning they sent out the letters with her story, Kate died.
“That was really hard for all of us and yet it was important we acknowledged that some of our kids don’t survive and some of the money we use goes to funeral expenses,” Taylor said.
The women said their first priority is to meet Oklahoma families who have just learned their baby has a congenital heart condition. They dispense coping advice and are eager to listen and help as they can.
Their second priority is to expand their efforts to help thousands of Oklahoma families. Their 2015 goal is to raise $30,000.
The third priority is to ensure that the needs of families are heard. High and Taylor have partnered with the American Heart Association, Lifeshare Oklahoma and the Zone at the Children’s Hospital as well as serving on hospital committees.
The fund has developed a free workbook that discusses the issues related to heart defects in a family-friendly language and provides guidance on how children can be evaluated and supported. It is available at www.malleyandhenryfund.org.
ONLINE
Scan the QR code at right to watch a video about the Malley and Henry Fund.