Our History
Our History
Mathilda can't walk
On the 16th June 2018 our second child, little Mathilda Bellinghausen, was born. But her story had already begun during early pregnancy. In the 20th week of pregnancy it was discovered that something might be wrong with Mathilda's feet. After several ultrasound examinations we were sent to the university hospital to have a comprehensive prenatal diagnosis done. Our constant hope that everything would be all right disappeared in the course of the prolonged examination. In the end, the shocking diagnosis:
"Unfortunately, your daughter will not be able to walk on her own. She is missing both calf bones. In addition, her legs are strong and her arms slightly contracted. An extremely rare malformation."
The two-hour drive home was like sitting in a self-propelled car. There was no way to properly gather one’s thoughts and feelings. What do we do now?
Our Hope
We started to closely examine Mathilda's clinical picture "fibula aplasia on both sides in connection with shortened long bones". After the birth and several visits to the doctor, we came across a family whose five-year-old son had been successfully treated with the same diagnosis. He can now walk! We immediately contacted the family and informed ourselves about the treatment. Her son was operated on by the American specialist Dr. Paley. We were able to visit him with Mathilda in Warsaw at the end of January 2019 during his stay in Europe. He examined Mathilda and presented his therapy plan to us. Mathilda needs a complex operation on both ankles when she reaches the age of 18 months and will learn to walk after a period of three months having worn a plaster cast and after subsequent removal of the metal pins. This will probably be followed by two leg extensions.
Full of hope we flew home. We were overjoyed at the prospect that our daughter might be able to walk. Unfortunately the health insurance does not pay for this treatment abroad. The first operation alone amounts to a six-figure sum that we cannot afford alone. It was clear to us that we had to make this therapy possible for Mathilda. Nothing would be worse than to have to tell our daughter later that for financial reasons the necessary treatment could not be administered to her.
Mathilda wants to run! Please help us with a donation so that we can make this treatment possible for her.
Donation Goal
Mathilda's treatment will consist of several surgeries. The first ankle surgery is planned for when she is 18 months old. It will take place during Dr. Paley's European stay in Warsaw in January 2020.
Afterwards, the first leg extension will take place when Mathilda has reached the age of 3-4 years old. The second leg extension is required at the age of 14. These two operations will be performed in the USA and will involve a longer stay. In addition, smaller operations will be necessary.
The first operation amounts to approx. 110 000€. In total, the required sum will be more than
300 000€. A therapy plan for our daughter is currently being prepared. We will publish it here.
The Treatment
Here you can see the SUPERankle treatment from Dr. Paley.
Foundation Help Mathilda
In order to provide Mathilda with the best possible therapy for her illness, we have established a foundation fund for our daughter. The foundation fund runs under the umbrella foundation "Haus des Stiftens" and has a recognised charitable status. The use of donations is monitored. Should more donations be generated than are needed for Mathilda's operations, these will benefit other children with the same clinical picture.
