Block party and blood drive planned in honor of McCandless tot with rare condition

Clementine Blackham, a 2-year-old from McCandless, is loving life. She loves her big sister, FinnLee, water balloons and Peppa Pig.

She even loves coffee.

Most of this sounds like any other toddler. However, Clementine is very unique in that she is the only known female with a rare genetic mutation called TLR8 that required her to endure more than 50 blood and plasma donations for most of her life.

Clementine’s Block Party bone marrow registry and blood replenishment drive on July 21 will help those in similar situations. The event will be from 1:30 to 7:30 p.m. at St. John’s Lutheran Church of Highland, 311 Cumberland Road, in McCandless.

“This event is monumental for our family,” said her mom, TannerRae Blackham.

“There is no way we would have been able to stay afloat financially or emotionally the past two years without the selfless acts of our community. This event is to bring more awareness to rare diseases and TLR8. To raise awareness for families in similar situations like ours that do not have the village,” she said.

The event is being held in partnership with bone marrow donor center DKMS and Vitalant. Donors are recommended to make an appointment ahead of time through vitalant.org by selecting the “Make an Appointment Now” tab and entering group code UZ0021181.

“We feel it’s our responsibility to replenish the blood bank for other people like Clementine,” said Blackham, who lives in McCandless with her husband and Clementine’s father, Tim, and their other daughter, FinnLee, 5.

The block party will feature more than 30 local vendors, multiple food trucks, princesses, superheroes, mermaids and fire trucks, she said.

“We are celebrating big,” said Blackham, 27. “We want our whole community there to celebrate with us.”

Tim Blackham, also 27, serves as a volunteer firefighter with the Highland Volunteer Fire Department. He also is a crane operator with Local 66 in the union and has a side business doing yard work to raise money for families in similar situations.

Clementine was lucky to receive a perfect bone marrow match when she was a baby, TannerRae Blackham said.

The family had to relocate to St. Louis for 16 months for the bone marrow transplant, chemotherapy and radiation. Clementine had to receive daily blood and plasma donations.

“So many people need their perfect match. We are so lucky we found ours, but people are dying every day waiting for their match. So the more people we have join the registry, the less people are dying or losing loved ones,” Blackham said.

Every two weeks, Clementine received an immunoglobulin infusion, which is extracted from donated blood.

“It’s pretty much taking a healthy person’s immune system and infusing it into someone who does not have a good immune system,” Blackham said.

Clementine, who turns 3 on Aug. 22, will have a two-year post-transplant celebration on Aug. 3.

The family and medical team currently are in a trial period of taking her off the infusions, and she has been off them for one month. But they have to travel back to St. Louis every three months for follow-ups.

Donating blood is one of the easiest ways to help save lives, said Maya Santana, a communications manager at Vitalant.

A whole blood donation takes about one hour from check-in to check-out. Donors are encouraged to eat a good meal, stay hydrated and bring a government-issued identification.

Upon arrival, Vitalant conducts a brief health screening, including checks of blood pressure, cholesterol levels and more. The blood draw itself takes about 15 minutes, followed by a 15-minute recovery period with light refreshments to ensure donor safety, she said.

Blood donations through Vitalant support a network of more than 900 hospitals nationwide, including 38 hospitals in Western Pennsylvania. Each donation has the potential to help patients undergoing surgery, trauma care, cancer treatment and other serious medical conditions.

“With someone in the United States needing a blood transfusion every two seconds, having blood already donated, tested and on the shelves ensures patients receive care without delay,” Santana said.

TannerRae said her daughter is thriving now, but it’s a roller-coaster ride for children who had bone marrow transplants.

“Bumps are part of the journey, so right now we are really enjoying her. With being the first female in history to have her mutation, we do not know what her future holds, so today we love her and cherish the two extra years her selfless donor gave us with her. And then we fight like hell to help with research for TLR8,” she said.

Clementine also loves muddy puddles and playing in the rain. She loves shopping and buying toys, and just went to a store for the first time in two years.

Her grandmother, Wendy Neely, who lives next door to the Blackhams, is proud of the family.

Neely, who owns health and wellness business Butt Naked on Perry Highway in McCandless, said it’s amazing how the community rallied around the little girl.

“The fact that Clementine has the power to bring a group together in an undivided time is so mesmerizing,” Neely said. “We want to get back to what we were given.”