Family selling dream home to fund life-saving treatment for 5-year-old daughter that will cost staggering amount
Briefly

"She was hitting all of her milestones, and then suddenly she experienced a really steep regression - her abilities sort of fell like an avalanche off the cliff, and it was terrifying," Golden Whitrod, Tallulah Moon's mother, said. This poignant reflection underscores the abrupt nature of Tallulah's decline, capturing not only the shock felt by the family but also the heartbreaking journey from a healthy little girl to one grappling with severe limitations.
"We'd gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a 4-month-old," Whitrod recalled. This quote highlights the drastic transformation in Tallulah's physical capabilities, emphasizing the emotional impact on the family as they navigate the challenges posed by her condition.
"I remember her looking at us as if to say, 'Why can't you help me?'" her mother said. "And I could feel that as a parent. I just didn't know what to do." This statement poignantly captures the helplessness parents feel when confronting such debilitating conditions, revealing both a child's confusion and a parent's emotional turmoil.
SPG56 is a type of hereditary spastic paraplegia (HSP) that usually begins around age 1 or 2 and worsens over time, causing muscle weakness and gradually robbing children of the ability to walk, talk, stand and sit up, as seen in past cases. This definition provides critical context for understanding the severity of Tallulah's diagnosis and the implications for her future.
Read at New York Post
[
|
]