Baby Jayme (1) is back home in Rijswijk after his treatment in Hungary. For three months he was together with his parents in Budapest, where crowdfunding allowed him to be treated with a special medicine for the muscle disease SMA.
Jayme‘s homecoming yesterday didn’t pass unnoticed. “All nice people were waving, the flags were hung out, there were garlands and a great banner made by the supporters association of ADO Den Haag,” said the family in a blog.
Jayme and his family went to Budapest in August to be treated for Spinal Muscular Atrophy (SMA), a rare genetic muscle disease that leads to paralysis. The treatment was possible after more than 20,000 people donated money. In total, the family raised 2.1 million euros, sufficient for treatment with “the most expensive drug in the world” Zolgensma. In the Netherlands, that drug, which slows paralysis, is not prescribed.
Tears in the eyes
The treatment in Budapest started quickly. “Within three days, Jayme could hold his leg upright, while before the treatment it immediately fell over to the side. Even the doctor had tears in her eyes,” reported Omroep West earlier.
When things went well, the family dared to come home again. Before that, first the parents had to be tested for corona. Then a grandmother and an aunt came to Budapest by car to take all the stuff back to the Netherlands. Jayme was transported by an ambulance to the airport yesterday morning. “Because the ride would take an hour and the roads in Hungary are very bumpy, Jayme was given a respiration for safety,” said the family.
Aftercare by the pediatrician
With a plane with special facilities, the family flew to the Netherlands, according to Omroep West. In the Netherlands, a pediatrician from Delft takes care of the aftercare for the baby, in collaboration with the SMA Centre of Expertise in Utrecht.