One-year-old Alle Jilg met the stranger who saved her life in May.
Born with severe combined immondeficiency (SCID) – often referred to as the rare ‘bubble boy disease,’ Alle needed a bone marrow transplant to give her some of the immune system she was born virtually without.
Luckily, a donor whose marrow matched hers was registered with Be The Match.
In February, Alle underwent a successful transplant and her parents, Mike and Tia got in touch with Jacob Oswald, a father-of-two whose donation had saved their own daughter’s life.
The two families united for the first time, telling Good Morning America they felt like one family as Jacob held grinning baby Alle.
Jacob Oswald smiles as he meets Alle Jilg, the one-year-old with SCID who received a transplant of his donated bone marrow in Nebraska earlier this year. Alle’s parents, Tiah and Mike (right) said they feel as though Jacob is already part of their own family
Alle’s parents describe her as the ‘light of her family,’ and the bubbly infant seems totally unaware of her rare disease.
But, just a week after she was born, Alle’s parents were given the devastating news that their little girl’s life would be in danger if she came into contact with viruses or bacteria that would give most children nothing worse than the common cold.
SCID is a broad term for a set of multiple immune deficiencies, caused by genetic defects.
They are born with low counts of or no white blood cells that defend most of us from infections.
The disease also renders medications that would normally treat serious infections like pneumonia, meningitis or sepsis ineffective, making these particularly deadly.
Even less severe infections like the chickenpox, however, can be dangerous to the one in 58,000 babies born with SCID every year.
Despite her rare disease, Alle has always been a happy baby and the ‘light of the family,’ her father says
Because she has SCID, Alle has to avoid all sources of infection. A marrow transplant will allow her to develop an immune system
Often called ‘bubble boy disease,’ children who don’t get bone marrow transplants have to be shielded from much of the world to protect them from the constant danger of infection.
A bone marrow transplant provides these children’s only chance at developing an immune system to protect them from the perils of infection.
Gene therapy has shown promise, but is still in clinical trials, and a bone marrow transplant is not a surefire cure, but it does offer SCID kids their best shot at survival.
And Alle desperately needed that.
‘The doctor specifically asked me if I understood the severity of [SCID],’ when Alle was born, Mike said.
‘The way he described it was: the common cold for us could kill her in less than 24 hours.’
The sooner Alle could get a transplant, the better.
But neither of her parents nor any of her siblings were a match for the little girl’s marrow.
So the family registered for Be The Match.
Luckily, the registry matched Alle with Jacob, who, of course, had no idea who his bone marrow donation might help.
Jacob (left) and Tiah (far right) introduced Alle to Jacob’s daughter, Hailey, three
The two families united for the first tie at Nebraska Medicine in May, and said they already feel like they’ve become one group, thanks to the connection between Jacob and Alle
In fact, he had registered donated in 2011, so it was nearly a decade later when Be The Match contacted him to let him know they’d found a match in need of his marrow.
Jacob and the Jilgs agreed to make contact, and he was thrilled to find out that his donation had gone to Alle, who underwent chemo so that her body wouldn’t reject the February transplant.
‘It was really emotional to know that it was a baby girl considering we had our own [daughters],’ Jacob told Good Morning America.
Jacob, his wife and their two daughters, three-year-old Hailey and Emma, one, traveled to Nebraska Medicine, near Omaha to meet the Jilgs.
‘It felt like we’ve known him forever,’ said Alle’s mother, Tia.
‘Jacob [is] a family member to us and we’d like to make trips to see him and his family. They’re amazing.’
Jacob, too felt instantly connected to the little girl and the family that had been strangers too him until moments before.
‘Getting a chance to sit down with the family and talking about what they had been through and opening our arms and accepting another child into our family essentially, it was a full scope of emotions,’ Jacob said.
Alle seemed to feel the love too.
‘She smiled the entire time we were there,’ Jacob aid.
Now, Alle’s parents can at last look toward her future with more optimism.
‘I’d like to see her fulfill her dreams, live a long and happy life have a family of her own,’ Mike Jilg said.
‘I see her fighting for what she wants and not giving up.’