Mission and History

The Rylan Project 

ABOUT US

The Rylan Project is a special, volunteer-run pediatric initiative of The Aneurysm and AVM Foundation (TAAF).  Named for VOGM survivor, Rylan Craig, The Rylan Project is focused on helping families of infants and children with arteriovenous malformation (AVM).

INTRODUCTION TO PEDIATRIC CHALLENGES

Since its inception, TAAF has recognized the special needs of its pediatric population.   The Rylan ProjectVascular malformations (such as brain aneurysm, and arteriovenous malformation) in a child's brain may have similar symptoms, diagnosis procedures, and treatments as adults, but with infants and children there are additional challenges to tackle.

Caregivers must look for symptoms children are unable to vocalize
First, infants and children are not able to vocalize their symptoms or act as their own advocate in the same way that adults can. Therefore it is critical that parents, friends, family, and other caregivers of infants and children have avenues to educate themselves on the signs and symptoms so that infants and children may receive appropriate care in a timely manner.

Experience with Pediatric arteriovenous malformation (AVM) is not commonplace
Second, there are a small number of medical facilities and doctors that treat pediatric AVM regularly. The majority of medical facilities or doctors have very limited, if any, experience with pediatric AVM; particularly with rare conditions such as Vein of Galen Malformation which is at type of AVM unique to babies.

Parents face additional challenges in their caregiver role
Third, infants and children are completely dependent on their caregivers. While all caregivers are heroes in the process – providing comfort, caring and advocating for their loved one – primary caregivers of infants and children are in a uniquely challenging position. First time parents are learning what is “normal” for the child vs. what should be of concern. Parents with multiple children must contend with how to explain to the siblings what is going on, as well as how to keep life “normal” for the children. Unpredictable series of doctor visits, tests, and medical procedures which may often require extended stays out of area can be very disruptive to the entire family unit making consistent day to day life (including school, homework, bedtime, and any other typical childhood activities) difficult if not impossible to maintain. And with all children, there is the ongoing concern about how the condition and treatment may affect long-term development.

OBJECTIVES

Recognizing these additional challenges that are specific to dealing with infants and children, TAAF is proud to partner with Melody Anderson in sponsoring the launch of a new TAAF initiative named The Rylan Project (TRP). The Rylan Project will focus on three primary objectives related to pediatric AVM:

  • Educate and promote awareness about pediatric arteriovenous malformation (AVM) with a specific focus on Vein of Galen Malformation (VOGM).
  • Connect patients, their families, and stories, to support each other in the realities of dealing with pediatric AVM.
  • Make information readily available that will aid parents/caregivers in pursuing treatment for the infant or child.

THE RYLAN PROJECT INCEPTION

Melody Anderson reached out to TAAF with an inspiring story of hope and perseverance. Her nephew Rylan was diagnosed at birth with a rare type of pediatric AVM called a Vein of Galen Malformation. Doctors gave him little hope for survival, and his parents were told to prepare for newborn Rylan's death. As Rylan's parents informed their family of the heartbreaking news, the family refused to accept this fate. They researched the condition and compiled information that ultimately led them to the handful of leading doctors and facilities experienced in treating Vein of Galen Malformation. Rylan was moved to one of these facilities. He was treated and survived. Rylan is now a healthy boy who is expected to live a normal life.

Melody recognized the difficulty in compiling the information that led to Rylan’s survival; and realized it was that information that ultimately saved his life. Doesn’t every child deserve for their primary caregiver to be armed with that same information, and hope for survival? And with that thought, she asked TAAF to join forces with her to create “The Rylan Project” - a special initiative to be focused on helping families of infants and children with AVM.