Graylon

Graylon's Story

Graylon Myles Posey was diagnosed with Hunter Syndrome at 4 years old. He was born with a rough start to life. At only two days old he was placed on ECMO (heart/lung bypass machine). The doctors did not know what had caused him to have severe pulmonary hypertension at birth but at the time it was believed he had pneumonia while in utero. Graylon spent 32 days in level 4 NICU care. Once he was able to come home we immediately started an early intervention program with him. While he continued to grow, Gray was keeping up with his peers. However he was always sick with some sort of upper respiratory illness. By the age of four he had four sets of ear tubes placed, a tonsillectomy, hernia repair and two separate procedures to remove his adenoids. The ENT who performed his tonsillectomy was the first Doctor to suggest that he may have MPS and he needed to have genetic testing done. Graylon began ERT treatment just before turning five. This was the beginning of the pandemic and unfortunately Graylon missed a year of school which really affected him cognitively. By six years old, Graylon had lost over half of his language and a lot of his skills, such as being able to use the toilet. We pursued a few clinical trials but for a few of them being over five was considered too old. We were thankful to have him participate in a biomarker study for Denali. After 48 weeks in the biomarker he was able to receive the drug at the rate the other boys in the trial were getting. We are hopeful for the advanced technology of being able to penetrate the blood brain barrier with the enzyme that Gray is lacking. We don’t expect him to gain many of the skills back that he had but our hope is that this trial medication will stabilize him so we can enjoy many more happy years with our boy. Raising funds for Hunter Syndrome is so important because I believe that through more awareness there will eventually be a cure. We need a cure!