“My son has achondroplasia and has completed all 4 phases of limb lengthening as of May 14, 2023: three bilateral 4-segment leg lengthenings and one bilateral arm lengthening for achondroplasia.
He began his journey in 2015, being the first pediatric patient to have a custom-made precise rod implanted in his femurs at age 6, June 2015 and ex-fix on both tibias. It was quite a surprise, and the decision was made 1 to 2 nights before his surgery that Paley wanted to experiment with a custom-made precise to see if it worked on pediatrics. It was a success. Kory received 6″. In May 2020, Kory returned to the institute for a 2nd four-segment bilateral leg lengthening all internal Precice 6″.
In 2021 he returned for a bilateral arm lengthening ex-fix of 5 inches. He just completed the final and 4th lengthening procedure, which was a four-month bilateral 4-segment leg lengthening. He completed this 4th phase on March 14, 2023, for another 6″ (8cm rods all four segments) but discharged on May 12, 2023!
I thought I would pose the question on how one is chosen to appear on the page as this has been a long journey for him and it would be nice to see him recognized for not only completing the 4 phases of lengthening for achondroplasia, but also being the first pediatric patient and I paraphrase this from Dr. Paley himself. We were approached the night before his first four-segment lengthening by Dr. Paley if we would be in agreement to allow him to implant a custom made Precice rods in femurs in 2015.
Dr. Huser quoted, and I will paraphrase, “Kory is the first he believes to be actively doing a bilateral four-segment leg lengthening and on Voxzogo daily injections simultaneously.” This past February 2023, all wonderful and notable accomplishments for such amazing advances in medical technology!
Above is a photograph with Dr. Huser back in 2021 at an appointment getting on the medication. We live in New York but chose to have Dr. Huser as his prescribing physician since Kory’s entire team is at the Paley Institute.
Attached is a photograph of the day Kory was discharged this past Friday from his final procedure and completion of all 4 phases of limb lengthening for achondroplasia with Dr. Robbins.
We are so proud of his accomplishments and can hardly believe that these eight years have flown by with total success. We are extremely grateful for all he has received. Regardless of recognition, we know what he has sacrificed for quality of life. Thank you and have a great day,” Kory’s Mom.
