Love for Lucas

At her 32-week ultrasound for baby #2, my cousin Sarah’s doctors at Edwards Hospital noticed some things that made them a little nervous. After a few more days of observation and tests, it was decided that a C-Section was needed to help baby get the growth and monitoring he needed. So, on May 24th, 2021 at 5:30 pm, Lucas Farron Steven Schneider was born at 4 lbs. 16.9 inches. The first few days were a lot to process as baby Lucas was given test after test. Doctors discovered that at some point in utero Lucas had a stroke and the effects of this will not be fully realized until he starts to hit milestones. Then on June 6th he had a low fever, so they did blood work and found he had two blood infections. The antibiotics he was given should have cleared this up fast, but for some reason it took a full week for the infection to clear. The number of tests the doctors were doing to find out why this was, gave them the idea to do a full genetic test, Exome Sequencing, that would answer all the questions about what is going on inside baby Lucas. The results of this test takes some time and while they waited Lucas was doing fine, and growing bigger and stronger approaching his due date. Talks about him being able to go home were happening, until July 6th after routine blood work showed platelets dropped so another blood culture was done. This was positive again for infection.

Doctors can see that Lucas’s body is making the correct cells to fight these infections, but something is going on that stops them from working properly. It was at this point that doctors at Edwards decided it was time to transfer Lucas to a hospital with specialists more equipped to handle a case like his. On July 11th Lucas was transferred to Lurie’s Children’s Hospital. Sarah and Mike are staying at the Ronald McDonald House while he is monitored every day, not knowing how long they will have to be away from their home with their lives on hold. On July 22nd the genetic testing results finally came back. They found that Lucas has a rare mutation of gene NFKBIA. This sort of mutation was first discovered in 2003 and only 14 people are known to have had it. Out of all types of this gene mutation, Lucas is the only one that has this particular kind. Since this is such a rare mutation, there is no clear path to take. Doctors are reaching out to international sites and going over all of Lucas’s options. Sarah and Mike have been so strong for Lucas and his older sister’s, Layla and Evelyn. We can’t imagine what they are going through or how stressful these few weeks have been. Because Lucas’s case is so unknown, there is no telling what the future will hold for him. Any help given to this amazing family, big or small, would make a difference. Please keep Lucas and his family in your thoughts and prayers.