Stem Cells for Conrad

Our cutie Conrad was born in March 2022, healthy and full-term. We were over the moon with our new baby and so excited to bring him home to meet his older siblings. Everything was going well. Conrad was eating, sleeping, and being a cute newborn, and his first doctor’s appointments went well. Then, at eight days, he started struggling to nurse. I took him to the doctor, and after some uncertainty about why he was showing little interest in nursing, our doctor recommended that I take him to the hospital, just as a precaution. At the hospital, he still had no fever and no obvious issues, but an x-ray showed he had enlarged kidneys. We were quickly transferred up to the children’s hospital, via ambulance, where it became increasingly clear that Conrad was incredibly sick and may not survive. He had a UTI that had caused renal failure, septic shock, and crossed the blood-brain barrier, infecting the fluid in the ventricles of his brain.

We watched in terror as our little one battled for his life over the coming days and weeks. Conrad was incredibly brave and managed to recover from the infection, after a month-long hospital stay and a very rocky recovery at home. When we left the hospital, we were told that Conrad was deaf, but we were hopeful that, due to positive MRI images, he would not have any other effects from the infection.

Over the next few months, Conrad’s hearing improved, and we did everything we could to try and help him. Sadly, though, he did not meet motor milestones. At eight months, Conrad was diagnosed with dyskinetic quadriplegia cerebral palsy, and the diagnosing doctor told us that he might walk or talk, but there was a good chance he would not do either.

CP makes it difficult for Conrad to coordinate his movements. As a result, at 16 months, he cannot roll, sit independently, feed himself, pick up or play with toys, crawl, or walk. He also is delayed in babbling and cannot chew or swallow as well as other children his age.

However, Conrad has always been a very social and interactive boy, and he is an absolute darling. He wants to move so much and is very effective at communicating how he feels and what he wants. He loves more than anything to play with his siblings (who play peek-a-boo, or pretend to chase him, or sing to him) and he brings us so much joy! We know that with the right help, he will channel all that determination and desire to move into figuring out his own way of doing things.

We want to provide our little Conrad with every possible opportunity to do so. Currently, Conrad attends physical therapy, occupational therapy, and speech therapy at least once a week and is receiving other types of new and innovative treatments, including neurospinal modulation, laser light therapy, Anat Baniel Method NeuroMovement therapy, and Masgutova Neurosensorimotor Reflex Integration therapy. Research shows that intensive amounts of therapy is one of the best ways to treat CP, so Conrad periodically attends intensive therapy sessions where he does multiple sessions of therapy every day for a couple of weeks. Although our insurance will cover a set amount of therapy visits a year, this is not adequate for the amount that children like Conrad need.

There are a number of new and exciting treatments for CP, but many are not covered by insurance. In particular, stem cell therapy has been shown in clinical trials at Duke University and elsewhere to help children with CP improve in mobility. This is not a magic bullet, but even a small improvement for Conrad could change his life! We hope that this treatment could help improve Conrad's ability to move his arms and hands and overall muscle strength so he can start meeting developmental milestones. This treatment will require us to travel internationally for treatment, and will likely require multiple rounds to get the most benefit.

One week of treatment costs $15,825 plus airfare and incidentals. Because we are also trying to pay for other treatments, we are hoping to raise at least some funds for our first round of stem cell therapy. Please help us give Conrad a full and wonderful life.