MCCANDLESS, Pa. — You could say the odds are stacked against 8-month-old Clementine Blackham, from McCandless.
“You always say, ‘I wish my child was one in a million, or I wish they were the first or the best,’ then you get put in a situation where you’re one in a billion and you’re like that’s not what I meant,” said Clementine’s mom, Tanner Neely-Blackham.
Clementine’s one-in-a-billion condition is an exceptionally rare gene mutation to her TLR8 gene.
She’s one of only 10 people ever diagnosed with the condition.
“She’s one of two children to have this mutation in every cell of her body and she’s the very first female to ever be diagnosed worldwide,” said Neely-Blackham.
To date, young Clementine has already had two major surgeries and 16 blood transfusions.
Ultimately, doctors say she will need a bone marrow transplant, which will require what’s called a “perfect match.”
“It’s not super common that there are perfect matches for everybody,” Neely-Blackham said. “There are circumstances that they’re not, which is why there needs to be more people that join the registry.”
That’s exactly what the Blackhams have set out to do.
In recent months, the family has recruited more than 650 people to join the national registry and sign up to be potential donors.
“Clementine is one of thousands of people that need a bone marrow transplant. Our hope is that we find a match for Clementine, but also that thousands of other people if we could find a match for them, too,” Neely-Blackham said.
Clementine’s support system is growing by the day with people reaching out from across the country. Her face is on signs and billboards across the state. Social media posts have gone viral. And a small event aiming to raise funds and awareness has blossomed into a major block party set for Sunday, May 7.
“The community that has just surrounded Clementine and us as a family has been amazing. People have come out of the woodwork that we didn’t even realize would put so much love into us,” said Neely-Blackham.
The block party will take place from 10 a.m. to 6 p.m. at The Block Northway, off McKnight Road.
There will be more than 50 vendors, food trucks, live music and more, as well as the opportunity to sign up to be a bone marrow donor.
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