We initially thought Max was blind or autistic. 

He was eventually diagnosed with CVI and more diagnoses followed - microcephaly, hypotonia, developmental delays, brain anomalies, etc.

We decided to pay out of pocket for Whole Genome Sequence testing.

Insurance refused to pay, but I wanted answers. Initially the test came back negative. Our neurologist said science hadn't caught up yet.

We were some of the lucky ones that didn't have to wait much longer. Two months later we received a letter that they re-ran his sample. He tested positive for a mutation on RNU4-2.

I quickly searched the internet and Facebook for answers.

I’m so glad I was able to find others who know exactly what we’re going through.

While the news has brought many emotions, he continues to amaze us every single day.

He is a determined, joyful, and resilient little boy—full of smiles, strength, and so much love.

His resolve constantly reminds us of what truly matters, and we’re incredibly proud to be his parents.

Though our journey may look very different than we imagined and wasn’t always easy, we’re embracing it with optimism, courage, and a strong support system.