Dee Dee Comardelle cried tears of joy when her daughter, Demi, tested as a bone marrow donor for her twin sister, Daelyn, who is battling a rare disorder.
Those tears of joy turned to tears of anguish when Comardelle recently discovered that both twins share the condition.
“It’s devastating,” Comardelle said. “Here you go at first thinking that one twin will save the other one’s life and then find out both of them need a transplant. It’s a long process and they will get sick in the process.”Genetic testing showed both girls have the two genetic mutations that cause HLH (hemophagocytic lymphohistiocytosis).
Since a cold triggered Daelyn’s onset of HLH at nearly seven months old, she has been on steroids and chemotherapy for the cancer-like condition, which caused her immune system to make some cells hyperactive and turn on her other cells. It compromised her immune system and typically has symptoms within months of life, including fever, an enlarged liver or spleen, lowered blood cells and neurological abnormalities.
Without a bone marrow transplant, the same immunity crash is anticipated for Demi.
“To me, I feel like she’s a ticking time bomb, and I’m always watching her … checking her for fever,” said the Luling mother. “It could happen tomorrow or four years from now.”
As a sibling, Demi had a 25 percent chance of getting HLH. But, having the genetic markers for it, makes it certain she will get it.
“They need a whole brand new immune system,” Comardelle said.
Rather than wait for the crash with Demi, the CincinnatiChildren’s Hospital Medical Center, which specializes in HLH treatment, has recommended both children receive a transplant. Accompanied by family, Comardelle is bringing her twins there this week to start the process and, once a donor is identified, will stay there up to a year for both transplants, which cannot be done at the same time.
From the hospital’s donor database, they’ve have more than 2,000 matches.
Since Demi’s diagnosis, Comardelle’s life has become one of even more worry, but she’s trying to stay positive.“I have a great support system,” she said. “Family and friends have been awesome.”
Comardelle also praised the New Orleans Ochsner medical staff who diagnosed Daelyn so quickly when she first became sick and then provided medical care.
“Just knowing I have that team with anything that goes wrong and they are right there makes me feel so much better,” she said.
She also praised her mother, Diane Bye, and daughter, Desiree Jeffrey, who both have been by her side.
“We’re on a long journey, but we’ll get through it,” she said. “I have to stay strong for them.”
She’s excited about going to Cincinnati to a medical facility that specializes in this condition.
“All you can do really is take it day by day,” she said.And one of those days that will really stand out is Nov. 1, when the twins celebrate their birthday.
“It’s the little things you think about,” said Comardelle as she wept about making those days count. “We’re gonna celebrate either way even if takes giving them three cakes with 1, 2 and 3. After everything they go through, we’re going to have to celebrate big.”
A raffle is being held as a fundraiser for the cause. Cost is $5 a ticket with first prize of $150, second prize Bloody Mary Basket (Vodka, Bloody Mary mix, and all the fixings), and third prize $50. There will also be a painting with a twist fundraiser on Aug.19. All seats must be paid in advance. A poker run has been set up for Sept. 23.