Jean-Paul Seitz

Introduce your family

In the photo, you see Jean-Paul with his dad Bernd, and his step-mom Annette. Jean-Paul is 10 years old, has two healthy brothers (Max, 25, and Daniel, 27 years old), and lives with his parents in a beautiful house in the smallest state in Germany, Saarland. His father Bernd does everything for him and has won full custody after a nasty custody battle. The birth mother does not want to be in contact with her son and due to personal rights we don´t give further information about her person. Annette joined the family in 2012, and it has been a happy family full of love for 5 1/2 years.

Diagnosis Date

Bernd realized quite early that Jean-Paul’s development was different from that of his healthy sons. He did not respond to his name and had motor problems. When the diagnosis “MSD” was made Pauli was about 1.5 years old. At the University of Heidelberg, the doctors predicted that Pauli would not live to see his third birthday.

What did it feel like when your child was diagnosed with MSD?

His father was devastated and says today about this period:
“For three months I just cried and thought to myself, if this sulfatase is what is missing, why can’t they just administer it to my child? When I realized that Paul was not curable, I just tried to make his life as beautiful as possible.”

How has MSD affected your child?

Together with Annette, who coincidentally is a qualified nurse and midwife, and a very empathic nurse, we enable Jean-Paul a 24 hours care at home. Jean-Paul deteriorated rapidly in the first three years of life and is now completely unable to move, almost blind, suffers from epilepsy, is fed through a PEG tube, and has a suprapubic catheter. He gets ergo- and physical therapy at home and every three months Botox injections in his muscles. His medication list is very extensive.

How does MSD impact your family?

Due to the demanding care, we are now very committed to the house and both work only part-time. The fact that we can never leave the house carefree, and are always under enormous tension, due to Jean-Paul’s very unstable condition is very difficult. We try to think positively and believe in our strengths because we love each other very much.

What are the biggest misconceptions people have about having an MSD parent?

In our social environment, we experience great understanding on one side but on the other side, many outsiders cannot imagine what it means to be responsible for a child with this illness. The doctors unfortunately give up very quickly, if there are problems. His brothers love him, but they do not participate in the care. They live their lives. Ultimately, it is us three with this cruel disease alone. MSD takes Jean-Paul away from us every day.

What is one thing you would ask from the world/people?

Since this disease is so rare, the doctors are very quickly overwhelmed with us. There is a lack of studies and research that could certainly allow another child who hasn’t progressed so far in the disease a better life. It would be nice if families like us would get more attention and help to defeat the disease by donations.

What is the latest news on your child?

Currently (January 2018) our little brave fighter is not feeling well. His lungs are a big worry to us and he is living with constant periods of shortness of breath, and total blockage with mucus despite multiple inhaled treatments, and he requires oxygen. But we will not give up. We do not quit. As long as he wants to live, we will support him.

List any social media accounts for your child:

Under the Facebook account “Annette Seitz” there is more information about Jean-Paul.