Melissa Bellini was overjoyed this World Rare Disease Day, watching her daughter’s school take part in the festivities to help spread awareness and educate students about these unique conditions.
Olivia was born March 2, 2009 and passed away March 4 2012, on the morning of her third birthday party. Towards the end of her life, she was completely vent dependent, ate through a g-tube, and was on hospice.
“But through all of the discomfort and pain,” says Bellini, “She found a way to smile to the very end.” Melissa became involved in Global Genes mainly through fellow mom and advocate, Carrie Ostrea, whose daughter, Hannah, also had Gaucher’s disease.
“Carrie often referred to Olivia as Hannah’s soul sister. They died three months apart.. to the day.”
Today, Melissa takes comfort in son John, seven, daughter Juliana, eight, and 18-month old Mathew who she was 9 weeks pregnant with when Olivia passed away.
Although all three of her children are healthy, she was proud to see them honoring their sister on World Rare Disease Day.
Children at Cornwall Elementary School have a program in which they focused on character traits, and in February they focused on Responsibility. The principal showed the children that being responsible also means taking care of our community and donating to a good cause.
So all week they had a coin drop. They had placed posters in the main hallway; one was “Rare Facts” and the other two were about two children in the community that have fought or are still fighting from a rare disease.
“One was about Olivia’s life with Gauchers,” said Bellini. “And the other was about an adorable little boy named Asher, who suffers from Heterotaxy Syndrome
Some of the teachers had incorporated the facts into the classrooms. And under the guidance of the principal, Megan Argenio, on Friday the school wore jeans.