My sweet and beautiful daughter Jeanne was born on May 24, 2017 in Brussels. The first months
went without a hitch, outside of difficulty taking weight she was growing normally. When Jeanne
was 7 months old, she developed pneumonia and had to be admitted to the intensive care unit of
the Children's University Hospital in Brussels (HUDERF). Because she also appeared anemic, doctors
decided to do additional testing.
At the end of January 2018 we received the diagnosis of Pearson Syndrome, we knew immediately
that it was serious. Her spinal cord was producing few red and white blood cells, her kidneys were
letting a lot of ions through, and her pancreas was not working properly. Besides having to take a
whole bunch of additional ions and pancreatic enzymes, she had blood transfusions every month.
Every encounter with bacteria or viruses was a challenge.
Because she vomited very often she didn't get enough ions and energy. After a while she received
TPN (Total Parental Nutrition) through a catheter, even when she was at home. We never counted
the number of days Jeanne stayed in intensive care but I estimate the total to be around 1 year.
3 weeks after her third birthday she lost the unequal battle against the disease. Her incredible
courage and cheerfulness inspires us daily to keep going.
We miss her tremendously! She was my only child and I am still extremely honored to be the mother
of such a beautiful and brave girl. Without any manual, she managed every time to trudge through
tough moments. Hopefully I will live to see a treatment for Pearson and no child will have to endure
anymore the same agony as my little angel.
Jeanne is very missed by her mama (mom), her oma (grandmother) and her tante San (aunt).