I recently interviewed Marge Karsten, founder of the John J. Karsten Endowment Fund.
Marge started this fund in memory of her son John, who attended school in the Platteville area, and had Duchenne muscular dystrophy.
John was a beacon of light in his community, and the community came together to ensure that he could attend Catholic school. Marge hopes that all students with disabilities will be able to attend Catholic schools.
What inspired you to start the John J. Karsten fund?:
After John died, we wanted to set up a fund in his memory that would help other parishioners in Platteville who have with physical disabilities.
Sometimes people with disabilities need things that are not covered by insurance.
Besides helping with needs, we thought a grant might provide funds for an experience or item that those with disabilities would enjoy.
We set up the endowment to give the recipient flexibility in deciding how to use the grant.
Because of our son’s experience with the unrelenting, progressive effects of Duchenne muscular dystrophy, the fund first focused on physical disability.
John lost the ability to walk at age eight, and using his arms and hands became more difficult during high school and college.
Eventually, he used a laptop ventilator mounted on the back of his power wheelchair to help him breathe, and he lost the ability to swallow at age 22 and received nutrition via a tube.
Through all this, he remained an avid Packer fan with a keen interest in sports; played card, video, and board games; kept apprised of current events; became a 4th degree Knight of Columbus (Msgr. John DeRocher Council 1386) at the urging of Deacon John Baxter at St. Mary Parish, Platteville; attended Super Bowl XXXV courtesy of Make-a-Wish Foundation; and enjoyed spending time with family and friends.
How did John impact the lives of others around him?:
He had a huge impact on his family; our daughters were so attentive to their brother and liked to attend events with him or just hang out.
Because of John, many had a chance to provide loving service to someone who really needed it.
I will never forget the kindness of those who helped in so many ways.
For example, the owner of a local car dealership made a “house call” to troubleshoot and correct a problem with our accessible van so John and his dad could get to a baseball game on time.
John dealt with countless difficulties and losses, yet he rarely complained. This made an impact on his immediate family, and others mentioned it too.
What message would you like to send to other parents of disabled children?:
Pray for your family and persevere even when life is hard.
Don’t blame God; seek His comfort, and know that He is by your side. Try not to bury yourself in work or other distractions, and be truly present to your family.
Have expectations for your child with a disability. Don’t coddle him or her, and don’t forget about your other children, if you have them.
Just love them.
Seek support from other parents of children with disabilities, and share what’s in your heart with empathic friends who are good listeners.
Seek professional counseling, ideally from someone who shares your faith perspective, before you think you need it.
I was blessed to receive the wise counsel of Sr. Mary Hopkins, a Sinsinawa Dominican who died in July.
What is your main hope for the John J. Karsten fund and the impact it can make?:
I hope it will make life a little easier for those who have added disability-related challenges. Increasing eligibility for the John J. Karsten Endowment to people with mental as well as physical disabilities in St. Dominic Pastorate will expand its reach.
What is your hope for the future of disabled children/students in the Diocese of Madison (or at home in the Platteville area)?:
My long-term dream is that every child with disabilities who wants to attend a Catholic school where religious instruction and practice are integrated into daily life will be able to do so.
That has not always been possible, but new programs that give parents of children with disabilities real school choice are being developed.
My family would like to start an endowment started in St. Dominic Pastorate to supplement such efforts so that all students, including those with severe, progressive disabilities, can have a Christ-centered education. Some might consider this goal unrealistic.
Progress toward it would be incremental, but “with God, all things are is possible”.
If you are interested in donating to the John J. Karsten Fund or in starting an endowment fund of your own, go to diocesemadisonfoundation.org/give or give us a call at 608-821-3048.
We would be happy to help in any way possible as we work together as one united body of Christ.
Grant McGurn is the operations manager for the Catholic Diocese of Madison Foundation.
