Damion Mackey was as energetic and lively as any little boy you could imagine. He kept his parents Lynn and Tim Mackey constantly on the go! But at around the age of seven, Lynn noticed Damion was having problems with his balance, and then his speech started to change. After many rounds with different doctors, Damion was diagnosed with Juvenile Huntington’s disease.
Huntington’s disease is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. It typically becomes noticeable in middle age, however in a very small percentage of cases the disease can begin before the age of 21. Unfortunately the Juvenile form of Huntington’s progresses very quickly.
With Damion’s diagnosis the Mackey family began a long and difficult journey where every day they would see some deterioration in their son’s condition. But that didn’t stop Tim and Lynn from giving Damion as many life experiences as possible – whether that was dancing with Cinderella in Walt Disney World on his 13th birthday or driving a race car. They made sure that Damion made the most of the time he had.
Through it all Damion kept smiling and was always eager to pull a prank on someone. “His teachers and support workers would always tell us that Damion taught them so much about patience and perseverance,” explained Lynn. “We knew that if Damion could cope day after day with his worsening condition, we could get through anything – he taught us how to love, laugh, and cry at the same time.”
As time passed, Damion’s condition inevitably declined and he came under the palliative care of Dr. Denise Marshall. Dr. Marshall helped the Mackey’s navigate the overwhelming network of specialists to determine the right care for Damion. When the time came, Dr. Marshall suggested McNally House Hospice as an option for the family.
“It was the right choice for us,” explains Lynn. “We were instantly welcomed with incredible support and care by the staff and volunteers at McNally House.” And it was at McNally that Damion received the comfort both he and his family needed to say goodbye. At the very young age of 18, Damion lost his hard fought battle with Huntington’s disease. “We are so thankful to McNally House for giving Damion the opportunity to die in a place where he received so much warmth and care,” stated Lynn, “we can’t imagine his last few weeks without the help of McNally House.”
Following Damion’s passing, Lynn participated in a bereavement support group at McNally House specifically for mothers, where she could share her experience with others who had also suffered the very difficult loss of a child. From this program, Lynn has made close friends and an extended network of support that she is extremely grateful for.