Aria Laurissa Vantassel PKAN Disease

Hi, my name is Melissa Jeffers and I am the grandmother of Aria. Aria has a diagnosis of “Classical Pantothenate Kinate-Associated Neurodegeneration” (PKAN).

As many as 3 in 1,000,000 children are born with PKAN each year and will pass away from this disease.

Classic PKAN is characterized by early childhood onset of progressive dystonia, Parkinsonism, and brain iron accumulation with children bound to a wheelchair and placed on a feeding tube at end of life. It is terminal and children with PKAN typically do not survive past the age of 10.

Genetic testing and MRI was performed to confirm Aria’s diagnosis. PKAN disease is characterized by both parents carrying the mutated gene without their knowledge and the MRI will display what is called The Tiger Eye in the basal ganglia.

Currently there is no cure for PKAN. Promedica BayPark, Promedica Neurology, Cincinnati Children’s Hospital and medical specialist in the state of Oregon will be monitoring Aria during this journey.

Our family is reaching out to family, friends, and community to donate to Aria’s cause.

Currently the need is help with finances to help move Aria and her family into a one floor home. Aria will be wheelchair bound so the need of a one story home is a necessity. Transportation that will be handicapped accessible is a necessity as well. We can not wait for the progression of this disease. This must be a smooth transition for Aria and her family.

Your donations will make a world of difference for Aria, her brother Kyzen , her mommy Vanessa and her daddy Kyle.

For everyone that donates to this cause, encourages our family and prays for us thank you.

Please send extra prayers to my daughter Vanessa and my son-in-law Kyle to stay strong and to always keep God first during this journey.