Alyssa's Army of Angels

My name is Andrea (Herbst) Stepien, and I am setting up this page to help my niece, Alyssa Herbst and her family. In July of 2006, my brother and sister-in-law, Larry and Cori were blessed with a truly rare gift- to have a child with Pierre Robin's Sequence (PRS) as the incidence rate of PRS is 1 in 14,000 to 30,000 births. Pierre Robin sequence is a condition in which an infant has a smaller than normal lower jaw, a tongue that falls back in the throat, a hole or cleft in their palate, and a compromised airway. Alyssa spent the first 2 months of her life unconscious in the NICU undergoing a painful jaw distraction in which the goal was to expand her lower jaw.  Prior to Alyssa’s birth, we had never heard of PRS, what these combinations of birth defects were, how they would impact Alyssa’s life (or their family and each of their 3 other children), or how they would cope with the daily challenges that arose and continue to present themselves 10 years later.  They have been on a medical odyssey for 10 years that began the moment Alyssa entered this world.

Over the last 10 years, it has been discovered that Alyssa has a severe case of scoliosis, as well as some misshapen vertebrae that caused her neck to grow at an awkward (backward) angle (74 degrees) from the normal/vertical plane.  Eventually, the curvature of her spine became so severe that the pressure put on her spinal cord impaired her ability to control her legs or walk. In June of 2014, Alyssa had spinal fusion surgery to alleviate the pressure on her spinal cord.  The orthopedic surgeon informed Larry and Cori that this procedure alone would not be enough to correct Alyssa’s scoliosis.   This surgical intervention was simply a band aid to restore Alyssa’s motor function and that further, more invasive surgery would be required when she is older to fully correct her scoliosis.  An appliance was installed directly to 5 of her vertebrae to fuse them together and to slow the curvature of her spine.

 During the operation, Alyssa’s spinal cord became unable to transmit stimuli to her legs and her surgeon was concerned by this. As Alyssa’s recovery in the hospital grew from an expected couple of days to a full week his concern was warranted.  A child who walked into the hospital under her own power left a week later in a wheelchair and spent the greater part of 10 grueling months, 2-3 visits/week at physical therapy and learned to walk again.  In April of 2015 Alyssa was discharged form physical therapy.  She had returned to school, resumed her activities, resumed being a child, and everything was normal again.  

For 1 year...

In late April, all of May, and into June of this year Alyssa battled a high fever and Cori repeatedly brought her to the pediatrician who suspected an infection but was not able to identify its source.  Several courses of antibiotics were not able to eliminate the fever.  All the while, Alyssa’s pain and discomfort were increasing and her mobility decreasing.  What started out as her “legs feeling weird” and “different” in early May became an attack on her mobility and her ability to be “normal.”  The child who fought tooth and nail for every step with such strength and determination for 10 months for the ability to walk after having it taken from her once is now having it taken from her a second time.  

After a six week long battle with the fever and underling infection (which never broke and they are still dealing with) they have been shaken to their core.  After an examination and MRI, Larry & Cori were informed that  Alyssa's spine has essentially collapsed and has developed a curve in it greater than 90 degrees and will require major reconstructive surgery.   

 Unfortunately, due to Alyssa’s cervical angulation and previously demonstrated spinal cord sensitivity this is not a procedure that Alyssa’s orthopedic and neurosurgeon feel comfortable treating at UNC Children’s Hospital.  It has been decided that they will be heading to Columbia University Hospital in NYC.  Alyssa will be treated and operated on by Dr. Lawrence Lenke, one of the world’s foremost leaders in spinal deformity surgery. His world-renowned practice is devoted exclusively to spinal deformity surgery with an emphasis on complex reconstructive surgery in children for the treatment of various spinal deformities such as scoliosis, like Alyssa's.

 Alyssa’s treatment will require an extended stay in the hospital in NYC (somewhere in the neighborhood of 3+ months).  This will also mean that one parent (most likely Cori) will need to stay in NYC also.

Your gift will help with travel expenses, food and lodging related to Alyssa’s hospital stays, co-pays, doctor/hospital bills, wheel chair rental, physical therapy, and any future medical costs for Alyssa.  Her journey is far from over.

Please know that asking for your help is one of the most difficult things Larry & Cori have ever had to do.  For them to be in a position where they can't do it on their own is very difficult for them to accept. At this point, there are MANY unknowns.  Anything you could give would be greatly appreciated.  If you aren't able to give a gift Larry & Cori truly appreciate your thoughts and prayers, kind words, encouragement, and hugs!  Thank you, and God Bless!