Hello everyone, 

 

Frankie and I have been in the wait for test results in the hopes to clarify Camila’s diagnosis or diagnoses. We received the remaining results from her lumbar puncture and they came back normal. As we are writing this, we are having a hard time finding the words. Another round of testing and no diagnostic clarity, no explanation for her symptoms, and no understanding of what Camila’s future holds. 

 

We have allowed ourselves to feel the heaviness of these last nine months, to reflect on our journey towards diagnostic clarity, the specialists we’ve seen, the testing Camila has undergone, and sitting in the wait. The feedback we have received is Camila very likely has an extremely rare neurological and/or genetic disorder that today is unknown, within the limitations of current testing and access to specialists who commonly diagnose rare conditions. 

 

It is very easy to slip into the dark places in our minds with all of this unknown. Is Camila’s condition(s) progressive? Will it affect her life expectancy? How much time do we get to have with her? What will her abilities look like in 5 years? 10 years? Will she experience regressions? Will she lose the abilities she has worked so hard for? Will her peers accept and love her? Will her community? How long will we be in the wait? These are not questions anyone should have to sit with. It is agonizing, relentless, and a never-ending rollercoaster ride of emotions. 

 

When we reflect on Camila’s care, we acknowledge that her pediatric therapies largely wouldn’t change as her providers treat symptoms, never a diagnosis. Being reminded of this has helped us make the decision to temporarily take a break from seeking clarity, from continued testing, and second opinions. We are stepping off the emotional rollercoaster. Our day-to-day will not change with this decision, but our mental health will certainly benefit from it. Knowing when to take a break, decrease frequency, or discontinue care is a skill set we have learned since becoming parents to a medically complex disabled child. When we are ready to re-enter that part of our journey, we look forward to sharing that news on this page and our next steps. 

 

For now, we are going to further prioritize accessibility and independence for Camila. We have a few weeks until we hear if Camila’s mobility device is covered by insurance or if we’ll need to pay out of pocket. Next steps would then be resurfacing our driveway and installing wheelchair ramps to allow for Camila to safely use her mobility device at home. In addition to that, we will need to make the interior of our home more accessible.

 

We look forward to sharing continued updates on how improved accessibility positively impacts Camila’s life and encourage you to continue sharing our Support Now page to help us reach our fundraising goal to complete these contracted jobs. Thank you for your ongoing support! 

 

With love, 

The Weilnhammer Family