Updated: Jul 23, 2020
Not long after Drayson’s first birthday, he rapidly started losing weight and body mass, showing symptoms of a rare disease called lipodystrophy - with a very low prevalence rate of only 1 in 1 million. By 18 months, Drayson’s BMI score had dropped to below the 15th percentile, and by his second birthday it was below the 3rd percentile. In spite of maintaining a healthy appetite, in twelve short months, Drayson’s body horribly melted away before our very eyes!
For nearly six months,
Drayson’s local medical team kept running into dead-end after dead-end searching for a cause and a cure. When nearly all hope was lost, last October, Mayo Clinic’s pediatric endocrinology and pediatric oncology departments came to the rescue. Providence shined as they recalled a seminal research article published in 2015, authored by a team of world renowned lipodystrophy medical scientists at the UT Southwestern Medical Center. Their research identified three cases where brain tumors were associated with lipodystrophy, and concluded with the strongest recommendation that “young children presenting lipodystrophy, with our without metabolic abnormalities, should prompt investigation for brain tumors".
An MRI of his brain was immediately scheduled and wah lah, there it was – a tumor the size of a golf ball, located in the middle of his brain, atop the optical nerve. Inoperable due to its location. Ugh!
Drayson now had an answer to what he is up against. It gave his family renewed hope for a treatment that would lead to a cure and eventually a return to a normal life. Dare we hope and pray for such an outcome?
For the past nine months and with the greatest of care, the medical teams from the OSF HealthCare Children's Hospital of Illinois, the St Jude Affiliate and Mayo Clinic have been collaborating to administer a 60-week chemo therapy plan. The good news is that the brain tumor has not shown signs of growth. The not so good news, the tumor has not shown any signs of shrinking, nor has he gained weight as originally expected.
No stone will be left unturned,
a biopsy has revealed that the tumor is a cancerous, grade 2, Pilomyxoid Astrocytoma (PMA). Dray's chemo therapy has been modified to tackle this uninvited scourge. All alternative treatments are constantly being evaluated.