Scout was diagnosed with genetic epilepsy at 6 months old.

She began having seizures around 2 months old, and it was discovered that she has 3 missing genes in one chromosome that contribute to seizures and other possible symptoms such as developmental delays and low muscle tone.

We also discovered that her immune system is low on some antibodies and she has gotten sick quite frequently in her short life - which is her biggest seizure trigger.

She is 11 months old right now and is still unable to sit on her own. She is currently doing weekly physical therapy as well as chiropractic care and we are looking into occupational therapy.

So far, we have been billed for around $8,500 of medical costs from ER visits, hospital admissions, and many tests. (And it’s only this low because Scout reached her deductible and max out-of-pocket costs of $8,000 per year on our current insurance.)

Though it's always possible that Scout grows out of these seizures, we want to be prepared and expect to be dealing with this aspect of her life long-term.

Our primary goal is to manage the amount of seizures through medication, while balancing the amount and type of medication to have minimal lasting side effects. Our secondary goal is to boost her immune system to minimize illnesses, in turn minimizing seizures. Our hope is to eventually not need any medication - but we have no idea how likely that is.

As we search for answers and options, we are starting to hit a wall - there are fewer and fewer types of care that are covered by insurance.

We would hate to delay potentially life-altering help for Scout simply because of insurance policies.

Current recurring costs:

Potential future costs:

The costs listed also don’t include medications and supplements that are ongoing and variable, as well as travel and lodging costs for out-of-state specialists, and also the work missed during hospital stays or travel for care.

We don’t know where the path will take us and what Scout will need - especially as infant brains develop and change so rapidly, her needs & behaviors can change at any moment. There are some intensive testing programs we’ve looked at that can cost upwards of $5,000 per week of testing and therapy.

Because her care is ongoing, it would be so helpful to have this cushion for us to dip into whenever we need it. Especially since her insurance deductible will reset at the start of next year.

Scout’s diagnosis was a shock to our family. Everything we’ve endured this year wasn’t anything we remotely anticipated, but all of your love, prayers, and support have made this journey a little less overwhelming for our family.

Scout has an amazing community surrounding her, and we couldn’t do all of this without you. Thank you for loving on our family these past several months!!!