Alivia : Neurofibromatosis

Written by the parents of Alivia:

Our sweet, fun, goofy, spirited, loving Alivia is a 3-year old who has rocked our worlds. She brings incredible joy to our family and fullness to our lives. We have many prayers for her, but one in particular that stands out the most. We want Neurofibromatosis (NF) to go away.

Alivia was diagnosed with NF when she was just months old. We began to wonder what was going on when many, many light brown birth marks, those we now call cafe au lait spots, started appearing all over her body. Those seemingly harmless birth marks opened the flood gates to what we today know to be NF.

NF can cause tumors, often inoperable, to form anywhere a nerve exists in the body. That’s pretty much anywhere – inside and out. From large, painful, disfiguring tumors growing inside the body to tiny, itchy tumors on the surface of the skin to potentially blinding tumors on the optic nerve and anywhere in between, NF can cause a myriad of problems or little at all. It is a cruelly unpredictable, progressive disorder that impacts each and every person differently. Research is advancing but there is no cure.

NF occurs in one in 3,000 births. Fifty percent of all cases are passed on from parent to child while the other 50 percent are spontaneous twists of fate that happen at conception. Alivia’s occurrence was the latter. To say we were caught off guard by her diagnosis is an understatement. We were devastated.

As Christian believers we surrender our worries to God and trust that no matter what Alivia’s future holds that she will always be safe in His arms. As imperfect people we take back that worry, hold our breath for the what ifs and carry a heavy heart for the many families struggling daily with NF. The only thing we know to do is to hope, pray, trust God, raise awareness and connect with others impacted by NF.

We are grateful for the beautiful pictures from Sweet Nectar Society and thankful for the opportunity it gives us to create more awareness around NF.

For more information on NF visit CTF.org.