Jennifer Trampler (physiotherapist, 34) and Okko Goeters (heating engineer, 38) live in the north of Hamburg. After their daughter Lina (5 years) the Tramplers became parents of twins. The three-year-old identical twins Bo and Keke were born prematurely in their 32nd week of pregnancy. The doctors found out early that the two were not developing normally. It then took several months until a genetic defect has been diagnosed in the boys, which has only been described about two hundred times worldwide: X-chromosomal myotubular myopathy. This defect results in respiratory distress syndrome and muscle weakness. Bo and Keke are in a wheelchair and connected to respiratory equipment. In Germany there are only twenty children with this syndrome, Bo and Keke are the only twins among them.
The heavy everyday life
It is not foreseeable how long Bo and Keke will live. Since the two have to be ventilated day and night and often suffer from pneumonia, the life of the family has changed completely. There are pediatric nurses in the family home around the clock. The children’s room and the living room look like the rooms of an infirmary. Therapies take place every day and constantly changing people come into the house.
Relief for the family
The family need a GALILEO device for the boys. The device offers both intensive muscle and relaxation training. It reaches the deep muscles through vibration, which is important for stability. The strengthening of the pelvic floor also supports the children’s toilet training. Training on the GALILEO device is recommended by the attending senior physician at the UKE (university hospital Hamburg Eppendorf) as a valuable additional therapy. Mother Jenny, a trained physiotherapist, has the perfect prerequisite for daily training.