Support Calvin's Fight Against SCN2A and Epilepsy

Hi everyone,

Our names are Sarah and Alex, and we are fundraising for our son, Calvin, and our family. For those who don't already know, we have had an eventful few months. In February, Sarah took a leave of absence from her teaching job to better support Calvin at home. We had already noticed his development was atypical and wanted to get him the right supports as soon as possible since early intervention is so important. We found out he has hypotonia, low muscle tone, which is why he needs physical therapy once a week. He was making such great progress with Sarah at home!

Then, right after Calvin’s first birthday, we found out that he has a rare genetic disorder called SCN2A, which can have a number of potential symptoms, ranging from developmental delay, autism, and epilepsy. This was discovered after already racking up bills with physical therapy, an MRI, and a hernia surgery at six months old completely unrelated to his current conditions. Despite all of this, we were thankful that he had not shown signs of epilepsy.

However, a couple of weeks later, Calvin did develop seizures, and we have been in and out of the hospital multiple times to help control these seizures, and are still working on getting them under control.

Most recently, we decided to get a second opinion at the Mayo Clinic in Rochester and we are glad we did. Along with a rare genetic disorder, Calvin has a rare type of epilepsy that is difficult to treat and catastrophic for development - infantile spasms. We are still in the works to find a medication to stop his seizures while limiting side effects.

With Sarah being out of work since February, Calvin being hospitalized 4 times in 5 weeks with more to come, and general life hurdles like an emergency appendectomy for Sarah last month, we are humbled to say we cannot do this alone. If there were a time to call in our village, it’s now. ❤️‍

We will use these funds to pay off medical bills and purchase any equipment Calvin needs that insurance doesn't cover.

We are hoping and praying that Calvin's suffering is over soon. We love our baby boy and want to do everything we can to support him.

We appreciate your love and support during this difficult time.

Thank you,

Sarah and Alex