We thought it could be beneficial to share and answer some commonly asked questions we've received these last few weeks. We hope you find it helpful.

Q: How are you feeling about this provisional VEO-IBD diagnosis? 

A: Honestly, not great. It’s not a good diagnosis. 

IBD is a chronic, lifelong condition with no known cure, and it can be extremely challenging to manage. It can be unpredictable, cycling between periods of remission and painful flares. It can worsen or spread over time, meaning inflammation doesn’t just affect the gut but can cause inflammation in the eyes, joints and skin which often requires treatments beyond the gut. Treatments alone can weaken her immune system, raising the risk of infections. It requires frequent medical monitoring and interventions, which means more general anesthesia, colonoscopies, endoscopies, blood work and stool studies throughout her life. That means compounded trauma, anxiety and greater risk of depression. 

Now add in very early onset, and IBD becomes a far more severe, aggressive and treatment-resistant disease alongside fewer standardized treatment plans and less research. 

We grieve for Camila and are giving ourselves the time we need to process complicated emotions. 

Q: Are you all still happy Camila has a feeding tube? 

A: I think Camila would agree that getting a feeding tube has been one of the best decisions we’ve made. Camila no longer experiences feeding anxiety or stress, simply because she no longer needs to consume all of her calories by mouth. Frankie and I no longer share that anxiety or stress because we know Camila is getting most of her nutritional needs met every day. For the majority of Camila’s life, feeding her consumed us. The load was heavy, relentless, and defeating. Every day felt like an uphill climb that never reached a peak. This feeding tube has been a literal life saver and an integral part of Camila’s life. 

That being said, it hasn’t been smooth sailing. Soon after her feeding tube was placed, she has experienced serious, painful GI symptoms, unexpected testing and procedures, recurrent weight loss, and slow weight gain. The truth is, even with a feeding tube, Camila requires highly involved dietary and GI care to support her health and overall growth. 

That is because VEO-IBD is quite calorie expensive. This means that chronic inflammation increases energy needs, which causes the body to burn more calories. Other symptoms of VEO-IBD lead to the loss of calories, protein and micronutrients. Medications for VEO-IBD also have unpleasant side effects that contribute to nutrient loss. 

Getting a feeding tube was not the finish line, it’s just the beginning. Camila loves having two belly buttons. She is excited to enjoy a tube feeding while going for a walk or watching her favorite shows. We feel so grateful for trusting that this would be the right choice for all of us, even in the hard moments that persist. We will always celebrate all forms of feeding. Our motto this summer: Sun’s Out, G-tubes Out! 

Q: Have you received the genetic results back yet from Whole Genome Sequencing (WGS)? 

A: We have. Results came back negative. Frankie and I were hopeful for answers but have also learned to have low expectations. We have an idea of our next step, but we’re not ready to pursue that step yet. When we do, we will share. 

Q: Has Camila received her custom wheelchair? 

A: She receives it tomorrow (7/17)!! We can’t wait and will be eagerly sharing photos in an update soon.

Q: How can I support you? 

A: This question means a lot. Most people want to help, but aren’t always sure how. We’re often taught that support means dropping off food or sending money. While those are absolutely helpful, they’re not the only ways to show up. 

Support can look different depending on who you are and what comes naturally. Some people are great at connecting others to the right resources, whether that’s a medical specialist, a support group, or someone who has been through something similar. Others focus on building community. They help create spaces where people feel less alone, whether that’s online or in person. 

For those who lean into planning and coordination, they organize meal trains, help with errands, or coordinate care. Others bring structure by helping figuring out appointment schedules, researching treatment options, or helping adapt a home for new needs. 

Emotional support matters just as much. Some offer a steady presence, quiet emotional support, and listening without trying to fix it. Others know how to lift the mood, keep things light, or offer a laugh when it’s needed most. 

And then there are people who jump into action. They solve problems as they come up, whether it’s finding equipment, arranging transportation, or troubleshooting day-to-day challenges. 

All of it matters. However you show up, in big ways or small, it makes a difference. We welcome it all.

Thanks for following along! 

With love, 

The Weilnhammer Family