GRAND RAPIDS, Mich. (WOOD) — A Holland family who lost their daughter earlier this year will celebrate her memory this weekend with a large toy donation at Helen DeVos Children’s Hospital.
Maeve Lynn was born Sept. 3, 2021. She was immediately diagnosed with Zellweger syndrome, a rare and fatal genetic disorder. Her mother, Heather Smith, said they had no idea their daughter was going to be born into such a difficult life.
“She had her first seizure, I think, five minutes after she was born,” Smith said.
After three weeks in the hospital, they brought their daughter home to live out the rest of her life around loved ones.
“We showed her as much of the world as we could,” Smith said.
Doctors said Zellweger babies live for six months. The disorder attacks newborns nerves and metabolism.
“We had her for five and a half months and it was beautiful,” Smith said. “It was perfect.”
There is no cure for Zellweger syndrome.
Maeve was loved by many and known around town as the ‘bougie baby.’ She was always dressed to the nines and her father painted her nails weekly.
“We dressed her in every kind of outfit you could think of. She had all the hair bows, all the headbands. She had all the clothes,” Smith said.
As the family now approaches Maeve’s one year birthday, they have collected toys in her name. Since Smith posted Maeve’s story on Facebook, the family has collected hundreds of toys, board games, books and baby accessories. The family plans to donate the bulk sum of the toy donations to the very hospital where Maeve was born.