Reality check-up

Several years ago, Lara sought out and reached out to the authority on brain malformations like Daniel's. In exchange for our token contribution to his research funding, Dr. William Dobyns reviewed Daniel's brain imaging back then and provided us with a diagnosis: cerebellar vermis hypoplasia. At the time, Dobyns was practicing and researching in Chicago. Today, Dobyns is in Seattle, and so are we. And this week, Dobyns and his team met Daniel face-to-face.

The hard facts:

• Daniel will almost certainly never walk independently. At nearly 7 years old, Daniel's trunk will not develop any further. No amount of physical therapy will alter this outlook, but we will continue to work with a physical therapist to get Daniel more comfortable with his walker.
• Daniel will almost certainly not be able to live independently when he is an adult. For example, it is likely that he will never be able to have a job. Through continued physical and occupational therapy, we strive for whatever level of self-sufficiency seems realistic.
• There will come a time when Lara and I are not able to take care of Daniel. A group home will likely be in his future. We are not currently financially prepared for such events but are hopeful that we still have sufficient time to begin appropriate planning.

What's good:

• Daniel social and language skills are still developing, and we are hopeful that continued speech therapy and special education will only bolster this progress.
• Genetic research is growing by leaps and bounds every year. Dobyns now has Daniel's DNA sample, which could be made available for any possible clinical trial that may emerge.
• Lara and I also both provided DNA samples (spit) to determine any genetic causes. This analysis won't help Daniel, but it could be useful for Alison to know down the road.