“As far as the donor is standing, our team has told us that they have a very good list of 10 out of 10 matches of non-related donors so it would be coming from the national registry, throughout the world, so it would be nationally and internationally. Right now the process is they’ve got to start making phone calls to those other registries so they can contact those potential donors. Then from there they have to see if the donor is healthy, you know, still willing to donate. If they are, they have to go through basically like a general physical to make sure they’re in good healthy standing. And at that time figure out what time they’d actually be donating the bone marrow,” Jilg said.
Tia and Michael have three older kids in Broken Bow who are staying with grandparents. Michael will soon have to go back to work and has been driving back and forth between Broken Bow and Omaha. Michael said they appreciate the activities hosted by the hospital and the support of family and friends. He said the whole experience has been an emotional roller coaster and expressed the difficulty of the family being a part, especially this time of year.
“We’d like to thank everybody for the support they’ve shown our whole entire family--the prayers for Alle especially. And you know we’ve gotten meals from people to help with my parents for feeding the kids. It’s just a true blessing where we live,” Jilg said.
KCNI/KBBN will continue to follow Alle Jilg’s story and show our support on behalf of the community.
BROKEN BOW—Michael and Tia Jilg welcomed baby Alle into the world on November 2. Alle looked healthy upon returning home from the hospital. However, a week later the Broken Bow couple received a phone call informing them that their seemingly healthy baby girl tested positive for severe combined immunodeficiency (SCID). This means Alle’s blood cells did not produce an immune system for her body.
Alle is now in need of a bone marrow transplant. Alle and mother Tia are in isolation at an Omaha hospital awaiting the next step. KCNI/KBBN spoke with Michael Tilg to get an update on this “emotional roller coaster,” as he described it.
"Basically what it is [her body did not] her blood cells didn’t produce an immune system for her. In some cases it can be fatal. It’s such a rare disease that between the 100,000 and 400,000 children that are born every year, only one to 40 of them are diagnosed with SCID,” Michael Jilg said.
Because Alle is prone to sickness and infection, the entire family must take extra precautions to avoid contracting airborne viruses. The family wears gloves and masks within the first 48 hours of being at the hospital and often when away from the hospital just to be safe.
The Broken Bow Lions Club held a special event on December 2 to raise funds for the Jilg family. The Lions hosted a meal and auction in exchange for free-will donations.
“It was a very humbling experience. You always think, you know, things like this aren’t going to happen to me and you go to help support other people. You know, with the support we had from the Broken Bow community and the surrounding areas and you know, from people showing up and donating items, and the Lions Club putting on a meal for us, it touches the heart that’s for sure,” Jilg continued. “Yeah it’s just a very humbling experience that you get from a smaller community, the people that are praying and supporting people.”
The timeline is still unclear as the family awaits a bone marrow match.
"We’re still waiting on some tests. They had to do some blood tests and send [them] off to Cincinnati to get back for her genetics and what the genetics will show then is what type of chemotherapy she has to endure and to see if she is healthy enough to do it right now or if we’ll have to wait a little bit,” said Jilg.
“As far as the donor is standing, our team has told us that they have a very good list of 10 out of 10 matches of non-related donors so it would be coming from the national registry, throughout the world, so it would be nationally and internationally. Right now the process is they’ve got to start making phone calls to those other registries so they can contact those potential donors. Then from there they have to see if the donor is healthy, you know, still willing to donate. If they are, they have to go through basically like a general physical to make sure they’re in good healthy standing. And at that time figure out what time they’d actually be donating the bone marrow,” Jilg said.
Tia and Michael have three older kids in Broken Bow who are staying with grandparents. Michael will soon have to go back to work and has been driving back and forth between Broken Bow and Omaha. Michael said they appreciate the activities hosted by the hospital and the support of family and friends. He said the whole experience has been an emotional roller coaster and expressed the difficulty of the family being a part, especially this time of year.
“We’d like to thank everybody for the support they’ve shown our whole entire family--the prayers for Alle especially. And you know we’ve gotten meals from people to help with my parents for feeding the kids. It’s just a true blessing where we live,” Jilg said.
KCNI/KBBN will continue to follow Alle Jilg’s story and show our support on behalf of the community.
“As far as the donor is standing, our team has told us that they have a very good list of 10 out of 10 matches of non-related donors so it would be coming from the national registry, throughout the world, so it would be nationally and internationally. Right now the process is they’ve got to start making phone calls to those other registries so they can contact those potential donors. Then from there they have to see if the donor is healthy, you know, still willing to donate. If they are, they have to go through basically like a general physical to make sure they’re in good healthy standing. And at that time figure out what time they’d actually be donating the bone marrow,” Jilg said.
Tia and Michael have three older kids in Broken Bow who are staying with grandparents. Michael will soon have to go back to work and has been driving back and forth between Broken Bow and Omaha. Michael said they appreciate the activities hosted by the hospital and the support of family and friends. He said the whole experience has been an emotional roller coaster and expressed the difficulty of the family being a part, especially this time of year.
“We’d like to thank everybody for the support they’ve shown our whole entire family--the prayers for Alle especially. And you know we’ve gotten meals from people to help with my parents for feeding the kids. It’s just a true blessing where we live,” Jilg said.
KCNI/KBBN will continue to follow Alle Jilg’s story and show our support on behalf of the community. 
