Cedar Deiro Medical Expenses

To those who know Cedar and to those who don’t - most importantly we ask for your prayers over her. That God would make a miracle happen and heal her. Also, we ask that you please read her story, donate if you can and share this so we can get her the help she needs.

Cedar was born just 4 months ago on June 6, 2023. Her short life has already had a massive impact on everyone she comes in contact with and she is making waves all over.

Cedar had her first seizure at 1 week old. At the time we didn’t know it until she was almost 1 month old after a 9 day hospital stay for respiratory distress and failure to thrive when the episodes started happening more frequently. She was put on her first medication by 2 months old and we were told that this was something she would likely just grow out of.

After EEGs and progressing seizures even on medication, we rushed her to OHSU by mid August in fear of infantile spasms or migrating focal seizures. Again, after a clear MRI and an okay looking EEG (despite having 60+ seizures within a 24hr period at one point during her stay) they put her on more medication and the tests continued.

By the end of September we received her genetic panel back with a result of CDKL5 Deficiency Disorder (CDD).

This is one of the most severe forms of epilepsy and has a devastating prognosis. The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development. When this gene doesn't work properly, children suffer severe disability and refractory seizures in addition to infantile spasms despite medication or other therapies.

Many children cannot sit, stand, walk, talk, or gain functional use of their hands. Most children have cortical visual impairment causing their brains to not have the ability to process what they see - it is as if they are blind.

As I write this, Cedar is on her 4th failed attempt at medication and still having daily seizures. Jordan and Nikki are aggressively seeking an intensive program that looks deeply into other more natural ways to support Cedar’s body and quality of life. This includes cranial sacral therapy, very specialized diet and consistent blood work for her and Cedar (due to nursing), detoxing from all the past medications, etc. They are also on a waiting list to be seen by an ophthalmologist that specializes in cortical vision impairment.

Now, more than ever, and in addition to these changes, it is the ideal time to seek intensive therapy for Cedar. The first few years of development, all forms of therapies and testing are pivotal in providing her with the best chance possible at quality of life.

They need your support to make these opportunities a reality for Cedar. The intensive therapy required for kids with her condition comes with significant cost - many of these therapy sessions, labs, testing, specialized equipment, and constant travel expenses are not covered by insurance.

The Deiro’s daily life has been completely flipped upside down and is something none of us could ever imagine happening to our own family or child. This will be a very long road and the impact on their family has been enormous. Unexpected and continuous medical bills trips to meet with experts, managing through their own grief and mental health to keep it together for their other 4 children and marriage.

The Deiro family is and will continue facing mounting medical expenses on top of the daily challenges. Any donation, large or small, is so appreciated and will make a big difference to the Deiro family. More importantly, please continue to lift them and their sweet Cedar up in prayer. Even if you're not able to give, please share their story.