^{Support Registry Update}

Medical Update

In support of
The Weilnhammer Family

We wanted to share another update on how things have been going with Camila over the past several weeks.

Since our last update, we haven’t been able to reach a place of consistent symptom stability or control. Instead, her symptoms have continued to ebb and flow. There are moments where she seems a bit more like herself, followed by stretches where she needs a lot of comfort and support to get through the day. A significant portion of her time is still spent trying to stay as comfortable as possible.

We recently completed her 4-week bloodwork after her last infusion to check her medication levels, and it showed that the drug is being cleared from her body much faster than expected. Because of that, the current plan is to move her infusions from every 6–8 weeks to every 4 weeks to try to maintain more consistent control of the inflammation.

She is scheduled for her next infusion next week. From there, we are hoping that over the course of the next 2–3 infusions, we will start to see her return closer to her baseline in terms of comfort, energy, and overall functioning. We know it may take some time, but we are hopeful this adjustment will move us in the right direction.

We’ll continue to share updates here as we move through this with her.

With love,
The Weilnhammer Family

Vanessa Weilnhammer
29 days ago

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Comments

Jenalyn VanSumeren

Thank you for this update! It sounds like your medical team and you guys are collaborating well, and her providers are being responsive to Camila’s presentation as opposed to following a more traditional timeline. So relieved to hear that! I hope come summer she is feeling better and she can be outside more in her happy place. As always, we’re in your corner and will continue to send you “waves” from the mainland!! Love you!

29 days ago

Mary Reilly

We were all so happy to hear that you were going home after an 8 week stay at the hospital. However the hard work continues for Camila and the two of you. I am sure that you have found ways to continue to find joy in your day to day like in Camila’s smile or giggle. However, the challenges you face are not lost on me. I will continue to send you reminders that you are loved whether it is in a text, meal, an errand or a listening ear. I know how much it means to your family to know that you are thought of. I love you three.

29 days ago

Megan Reilly

Sending waves from the mainland indeed! Thank you for continuing to share updates on Camila and yourselves 💜💜💜

29 days ago

Teresa Kolpak

Thanks for the update!! Know that we are always thinking and praying for all of you. I hope Camila feels better with the treatments being more frequent and she gets some relief 💜💜💜

29 days ago

Eileen Fitzgerald

Your medical team sounds proactive. I’m glad they keep problem solving what’s best for Camila. Hopefully this plan gives Camila some comfort and she can enjoy roaming the neighborhood again. You are all loved by us! ♥️♥️💜

28 days ago

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