We are a family of 5 from Hungary. Our middle child is Simi (pronounced: Shimi), a 10-year-old boy who has pseudoachondroplasia. We had been raising funds since December 2024 to get Simi’s legs straightened and lengthened at the European Paley Institute when at the end of May, our paediatrician noticed something unusual during a routine examination. Simi’s leg reflexes and certain neurological signs suggested there might be a serious underlying problem. We were very fortunate to be referred immediately to a neurologist, and within a short time Simi had an MRI.
The MRI results were shocking: Simi’s neck was extremely unstable, and his spinal cord was compressed to just 3 mm instead of the normal 13 mm. This news was devastating. Although Simi could have been operated on in Hungary, the doctors here recommended that we seek a second opinion, as they were unfamiliar with his rare condition. We wanted the opinion of surgeons who were highly experienced with Simi’s diagnosis and who had performed similar surgeries many times before.
We reached out to three hospitals we had previously been in contact with, in the UK and the US. Dr. Feldman from the Paley Institute in the US responded right away. After reviewing Simi’s condition, he urgently advised that Simi needed surgery as soon as possible. Within three weeks, we rearranged our lives, secured travel and flew to West Palm Beach, Florida.
In mid-July, Simi underwent life-saving surgery performed by Dr. Feldman and his team at the Paley Institute. During the operation, they fused his spinal vertebrae and decompressed his spinal cord at the foramen magnum and C1. It was an extremely complex and delicate procedure, but they did an extraordinary job. Thanks to their expertise and care, Simi’s life was saved.
Today, Simi is back at school, full of energy and joy. He has even returned to swimming, something he loves very much. He continues with physical and occupational therapy several times a week, and we are grateful every single day for the progress he has made.
We will never forget the dedication of Dr. Feldman and the team at the Paley Institute. They gave Simi a chance at life, and for that we are forever thankful.
