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St. Charles Borromeo School Adopts Toddler With Rare Condition

ben and hillaryAn effort to lift the spirits of a toddler battling a rare condition continued Tuesday, even though the honoree was too sick to attend.

WGNO News Reporter Darian Trotter has details about the ongoing effort and how you can get involved.

“It’s for Ben that we’re doing this and one day we’ll hopefully be able to celebrate it with him,” SCB parent Brad Grundmeyer said.

Students lifted their voices during a pep rally, to lift the spirits of child who couldn’t be here.

Two year old Benjamin is fighting Central Nuclear Myopathy.

Even though the rare genetic condition has little Ben on life support, it’s not stopped him from being playful with his two older sisters.

Both attend St. Charles Borromeo School; where Ben has been adopted because he doesn’t yet have a school of his own.

“Well I think anytime a school community gives back to the community, it’s a way of showing that there’s love and there’s support,” Grundmeyer said. “Whether there’s the good time and the bad times we all as a community rally around our families.”

And the SCB community has joined the effort to help build “Miracles to Milestones.

The handicap accessible playground will allow Ben to play with others.

His mother Hillary Sirmon is spear-heading the 250-thousand dollar project.

“Having a child with a rare condition, you feel helpless and this will feel like we’ve actually been able to help Benjamin.”

This pep rally was intended to be a welcome for Ben, but he wasn’t feeling well enough to attend.

Still they rallied in his honor, and are sending out well wishes.

“What we’re going to do is wait until his health is up and he’s ready to come to another pep rally we’ll have at the school,” Grundmeyer said. “We’ll have a shirt welcoming him to the SCB family make it all blue, white, and gold for him and make it a great experience.”

Fundraising efforts for the playground are still underway. If you’d like to get involved the Sirmons have created a non-profit organization to collect funds. Contact Hillary Sirmon, miraclestomilestones@yahoo.com