Mighty Mav: Support the Lana Family

Every parent's worst nightmare is losing a child.

Imagine receiving news that your precious son has an extremely rare genetic disease. It’s been described as “the worst disease no one has ever heard of”. This is the reality for my niece and her husband as their precious two year old son, Maverick, was recently diagnosed with Sanfilippo Syndrome.

What is Sanfilippo Syndrome?

Sanfilippo Syndrome is a 100% fatal, neurodegenerative disease. It’s often called “childhood Alzheimer’s” or “childhood dementia”. It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then pass away, often before the second decade of life. Currently there is no FDA-approved treatment or cure. To learn more, please visit Cure Sanfilippo Foundation.

But there is research happening and there is hope.

Our hope comes through our faith in God.

Our hope comes through clinical trials, research, and new treatments.

Our hope comes through support of family, friends, and the community.

Maverick is full of life and deserves every opportunity to thrive and live! His smile lights up any room and his laugh brightens every day.

How to Support

Please join me in surrounding this beautiful family with love, prayers, and support as they begin to navigate this difficult journey. Let’s lift this family up by easing the stress and burden of finances so they can put their energy into helping Maverick thrive!

There is a possibility of a clinical trial happening this fall, which will require relocation, a decrease in income for the family, and ongoing bills that need to be paid. Additionally, there will be many practical expenses that will arise such as a safe-sleep bed, a wheelchair, and other specialized equipment as needed. The specific needs are unknown at this point, but the overall financial need is great.

For those that know this family, you know how special they are. Please consider supporting them in this way and for those that cannot, your prayers for a miracle are much appreciated.

Tristan, Autumn, Maverick, and Palmer - you are not alone. We are rallying alongside you, standing with you, and joining in this fight to save Mav’s life.

#mightymav