Jenna J. - Quilt Finished in 2005

Born: April 14, 2002

Illness: Neurofibromatosis I, Bilateral Optic Nerve Gilomas, Spinal Plexiform Neurofibroma

A Thank you from Jenna's Family!

Written October 24, 2005

THANK YOU so much for Jenna's beautiful love quilt. It arrived safely at the post office on Saturday and I rushed over there today to pick it up.  The quilt is absolutely amazing and Jenna already loves it, particularly the pillow.  Your timing is amazing as she is getting her first twin bed for Christmas and we plan to use it as one of her main covers.  Love Quilts is an amazing program and has been a tremendous blessing in our lives.  We have enjoyed watching the

squares come in all year long and will now enjoy watching Jenna all wrapped up and cozy in her quilt.

Please express all our love and gratitude to all those who participate in this great mission. 

Best Wishes,

Ann and Jenna J.

Jenna J.'s Story

written by mom Ann

Jenna was born with Neurofibromatosis I.  At age 3 months, her pediatrician noticed about 17 cafe-au-lait spots, which is highly indicative of this disorder.  So, she went to the opthomologist and neurologist bi-annually for monitoring.  Jenna was unfortunate enough to contract bacterial meningitis at age 8 months.  Gratefully, she made a full recovery.  This past January, at a routine opthomology appointment, swelling of the optic nerves was discovered.  A brain MRI revealed tumors on both her optic nerves (bilateral optic nerve gliomas).  This occurs in approximately 15% of NF patients.  After considerable consultation, Jenna's doctors decided to take a "wait-and-see" approach.  She has been monitored for the past 9 months with quarterly brain MRI's and monthly eye exams.  Jenna was experiencing back pain, so in August 2004, a lumbar MRI was added.  She was found to have a plexiform neurofibroma on the L2 portion of her spine as well as dural ectasia (swelling of the spinal sac).  These added conditions will also be monitored. 

Written by Jenna's mom Ann on October 20, 2004