By TARA CONNOLLY Staff writer
When the heart of the 22-year-old daughter of Deacon Francis Elchert and his wife, Michele, stopped after a long battle with heart disease and a protein syndrome – theirs grew bigger.
In 1991 the couple were elated to welcome Amber Louise Elchert into the world and were stunned 15 hours later when doctors informed them that she was born with hypoplastic left heart syndrome (HLHS), a complex and rare congenital heart defect in which the left side of the heart is critically underdeveloped.
Before she was 18 months old Amber endured three open-heart surgeries to repair her undersized mitral valve, left ventricle and aortic valve, with the hopes that it could better pump oxygenated blood into the aorta and carry blood to the rest of her body.
“She also did not have a spleen and [had] a weakened immune system. Doctors gave her no chance of survival past the age of 6 months,” recalled Deacon Elchert, who serves at St. Elizabeth of Hungary, Pen Argyl.
To their amazement and through trust in the Lord, Amber persevered despite at age 2 developing protein-losing enteropathy (PLE), the severe loss of serum proteins into the intestine and the disease that ultimately claimed her life.
She enrolled in school and graduated high school with her class. She then went on to Muhlenberg College, Allentown and earned a bachelor’s degree in psychology four months before her death.
All the time through health scares and sickness, Deacon Elchert said Amber’s motto was “I can do this.”
“Her desire was to help terminally ill children live full lives, and that is why she studied psychology,” he said.
During her final days in hospice at home, she asked her father to continue to help others like her after her death on Oct. 1, 2013.
“She told me I was her protector and she trusted me. She wanted me to protect and help other kids,” said Deacon Elchert.
Overcome with grief, he said, he and his wife took the next step and proudly established the Amber Louise Elchert Foundation to help chronically ill children.
“We have all walked the journey of disappointment. But we soon came to realize a greater purpose – even though the outcome isn’t what we expected,” said Deacon Elchert.
Their greater purpose became the foundation that provides “Amber’s Packages of Love” that includes personally selected gifts after speaking with parents of a sick child. Each package also includes a blanket blessed by Deacon Elchert and a stuffed turtle that plays Amber’s recorded laughter when squeezed.
“Having a sick child is stressful, and emotionally and financially draining,” said Deacon Elchert.
The foundation also directs “Operation Amber Christmas,” a program that provides Christmas presents to sick children in hospitals on Christmas Day.
In addition, the foundation offers scholarships to: a graduating eighth-grader of Immaculate Conception School, Pen Argyl who has shown the ability to overcome obstacles; a graduating senior from Pen Argyl High School who has lived with a chronic illness or special challenge; and an incoming freshman at Muhlenberg College who will major in psychology.
To better comfort grieving families, the foundation also funds bereavement services to families in the Slate Belt area, and Deacon Elchert personally ministers to families suffering a loss.
“As a deacon, I have the unique opportunity to bring God’s mercy to so many in need,” he said.
“Sitting with a family preparing to lose a child is never easy. But being alone while losing a child is even more difficult.
“Amber’s life taught me so much about God’s love, and we were filled with gratitude when God called her home.”
For more information or to nominate a child or family, visit http://www.amberelchertfoundation.org/.
Queenship of Mary one of the charity’s benefactors
In 2008, under the guidance of then-pastor Msgr. John Campbell, Queenship of Mary Parish, Northampton, was inspired to take a charitable organization under its wing to provide financial assistance and spiritual support.
Every year the parish continues to select a charitable organization to be the recipient of the once-a-month second collection at weekend Masses.
The Amber Louise Elchert Foundation is the parish’s charity selected for 2017.
In the past, parishioners have financially assisted organizations such as Stephen’s Place, a nonprofit residential community that assists adult nonviolent offenders with a history of substance abuse in Bethlehem, and VALOR (Veterans Assisted Living Outreach) Clinic in Jonas, a shelter to help homeless veterans get back on their feet to lead productive lives.
Current pastor Father Lamb said parishioners contribute an estimated $2,000 every month for the designated charity.
“Our parishioners are really wonderful people, and it’s really edifying to see them care so much with a heart that wants to give back,” he said.