“… The biggest risk being sudden death.” I didn’t understand the words as they left the doctor’s mouth. “These kiddos are at risk for sudden death, this can’t be the first time you’ve heard that.”
But in those words- so frank, so raw. It was.

We are the Zehr family. We’re raising funds to help cover a costly neurosurgery our 7 month old baby needs. His procedure is scheduled for September 13, 2024. 

Teddy has achondroplasia
While skeletal dysplasias are rare genetic conditions, achondroplasia is the most common. Teddy has this type of dwarfism. Little people are at risk for a lot of complications. Teddy has experienced many of them already even though he’s only 7 months old. He had respiratory failure right after birth because of his tiny lungs and chest. At 3 weeks, he had a respiratory infection that landed him in the hospital for days. At 8 weeks, he had a choking incident, turning blue and limp and we did CPR on him. He had issues latching, bottle feeding and swallowing, and took over a month to reach his birth weight. He’s collected more specialists than an 80 year old, had endless appointments, procedures, and therapies.



Teddy needs neurosurgery
When we found out the hole at the base of his skull was too small for his spinal cord, we met with neurosurgery. It seemed like a pretty straight forward visit, and maybe it’s being his mom and trying to be optimistic; or maybe it’s being a nurse and reading the report prior to even meeting with his doctor. Sure, he’ll need surgery, but I really wanted to wait for him to get a little bigger. A little stronger. I just wanted to have more time with him, in case things don’t go as planned. We were encouraged to get a second opinion. So of course, we did.



Teddy got a second opinion
We traveled the 2 hour flight to Los Angeles. That’s where the best doctor in the world for this surgery calls home. When we got there, it was explained to us he’d need more sedated imaging done to get a full picture of status and risks. That’s when we found out it’s urgently necessary to open up that hole in Ted’s head. The flow of cerebral spinal fluid dams up whenever he looks down. Teddy is a curious little honey, following sounds and sights, trying to catch up to big brother Thomas’s lightning moves; flexing his neck every chance he gets. Can’t we just keep him from bending his neck? Spoiler alert- nope! He had a rough start on physical milestones (because of his condition and subsequent issues) and now that he’s catching up, there’s no stopping him! He needs this surgery. This will help Teddy not only to sit up and someday run, but to swallow, and sleep, and breathe safely.



Foramen Magnum Stenosis can cause sudden death
Most individuals with achondroplasia have some level of foramen magnum stenosis. The hole at the base of the skull is too narrow to accommodate the spinal cord and cerebral spinal fluid that travels through it. If this isn’t corrected, it can have a serious effect on breathing, oxygen exchange, prolonged apnea, central sleep apnea, choking, paralysis, hearing, milestone regression, and like I had mentioned a few times- increases the risk of sudden death during infancy. It’s also common for these kiddos to have more than one surgery, so this may not be the only time Teddy will need this procedure, although he will be starting a newly FDA approved medication that has the potential to address many of the risks associated with achondroplasia. The extension studies for this drug are showing some promise with widening the foramen magnum and potentially reducing the amount of surgeries.



Why are we asking for donations? I have exhausted all paid leave as of a few weeks ago. I took an extended maternity leave because of Teddy’s ongoing needs, and then had some serious depression and anxiety after losing my mom suddenly, so I took a leave for that too. Joel’s been the sole provider for us since my last day at work the week before my c-section. We love our babiest boy, but wow! It has not been cheap! Here’s the kicker folks: we have insurance. And until now it’s been manageable. However, this isn’t fully covered. We have an out of network/out of pocket max we haven’t even touched yet. And so, this is where you fine people come in. Please consider giving any amount you can spare. Share this like crazy. Send it to your single, rich uncle. Seriously, give us your milk money!



Teddy, and we thank you! 
I will end with: THANK YOU! Thank you for giving, for sharing, for praying, and for reading- I know it was a long one. We love this boy so much, and brother Thomas can’t wait to wrestle with him. We know we are asking for a small fortune of help so we don’t go bankrupt getting our baby the care he needs. We can’t thank you enough.

Teddy, Thomas, Joel, + Cristina

If you want to know more

https://www.cedars-sinai.org/health-library/diseases-and-conditions---pediatrics/a/achondroplasia-in-children.html

https://pubs.asahq.org/anesthesiology/article/131/2/396/18103/Foramen-Magnum-Stenosis-and-Spinal-Cord

https://investors.biomarin.com/news/news-details/2024/New-Data-for-BioMarins-VOXZOGO-vosoritide-for-Multiple-Growth-Related-Conditions-in-Children-Presented-at-Pediatric-Endocrine-Society-PES-Annual-Meeting/default.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9448429/