Story
Name
Nicolas and Maddox Saghini
Injury/Illness
Metachromatic Leukodystrophy
In September of 2022 our family was devastated to learn that BOTH of our beautiful boys, Nico and Maddox, have Metachromatic Leukodystrophy (MLD), a rare genetic disease that affects the brain and nervous system by causing the deterioration of myelin, the substance that protects the nerve cells. The result is a progressive loss of motor and cognitive function which is eventually fatal.
When the boys were first diagnosed, I (Sarah) immediately left my job with the county school system to care for them. I was able to manage with help from my mom, Geena, (also pictured) and Bobby continued to work. However, in the last two years as the boys have grown like weeds, they have also lost a tremendous amount of functioning and their care has become increasingly complex. There is no cure for MLD, and no treatment options are available at this stage of their disease other than to manage their pain and symptoms. Both of our boys are now on hospice care.
Bobby and I are painfully aware that our time with our boys is limited. Bobby has now made the difficult decision to leave his job to help manage their care; but more than anything, we just want to be together as a family as much as possible. Please help us during this difficult time -- we don’t want to miss a minute with our boys.