One Child’s Story: Zachary
A letter from Debbie and Kevin Katzbeck:
On January 21, 2000, we were blessed with the gift of life. Zachary Joseph Katzbeck was born with hydrocephalus, which is caused by the build-up of cerebral spinal fluid in the brain. Zachary was a mere 20 hours old when he underwent neurosurgery at Children’s Memorial Hospital to place a shunt in the blocked ventricle.
After the surgery, Zachary’s recovery was monitored and he underwent extensive testing to determine the affects of the hydrocephalus. He was subsequently diagnosed with septo-optic dysplasia. Septo-optic dysplasia causes an endocrine condition known as hypopituitarism and optic nerve hypoplasia. Optic nerve hypoplasia is the absence or underdevelopment of the optic nerve. In Zachary’s situation his optic nerves are considered “miniscule.” They are as small as they can possibly be without being absent.
We have been told that Zachary will have no vision or vision so low he would miss out on many activities most children enjoy daily. Thanks to Zachary’s vision therapists and doctors, we are strengthening Zachary’s limited vision to it fullest potential. The One Small Voice Foundation was created to raise money for optic nerve research. We have discovered a research team at Childrens Hospital Los Angeles headed by Dr. Mark Borchert, a neuro-opthamologist. Dr. Borchert and his team are currently researching the cause of optic nerve hypoplasia and other optic nerve disorders.
Optic nerve hypoplasia is the leading cause of blindness in infants in the United States, but currently there are very few research grants available to assist the funding of optic nerve research.
As I write this update about Zachary he is it at school at his beloved ELIM Christian...today, he has one of his favorite activities swimming! It is so hard to believe that Zachary will be turning 15 in just a few short months...where did time go?
In the past 15 years Zachary has had 36 shunt malfunctions and surgical revisions, 1 brain tumor and craniotomy to remove a tumor, countless adrenal crisis's that resulted in hospitalizations and PICU visits, dozens of seizures, weekly therapies and daily challenges from global developmental delays complicated by Autism and Vision Impairment. Despite these setbacks, these experiences do not define Zachary and this continues to amaze us and give us strength.
If I were to describe who Zachary is today the following words, relationships and ideas come to mind: Strength and Perseverance, Angel in Disguise, Captain Mischief, Son, Brother, Grandson, Nephew and Friend. While we are regularly reminded of the life Zachary would have had if he had not been born with Optic Nerve Hypoplasia and Hydrocephalus we do not let this hold us back from allowing Zachary to develop to his fullest potential. We celebrate his successes as he experiences these events...graduation from 8th grade and transition to High School, to learning his notes in piano for both his right and left hand, to his VIP Soccer team, learning to read, learning to type on a keyboard, to his love for his brother and family.
As I reflect back on the past 15 years I think of all that Zachary has taught our family and of all of the love his has spread. I think of his strength and resilience and of his ability to love unconditionally and of his beautiful smile and his contagious laugh. I think about his collections of characters and the comfort he finds in these collections and the hours of entertainment these characters provide to him. I think about the structure of a schedule and how it gives him comfort and alleviates his stress and anxiety and of all the caretakers who have helped us to keep him on his schedule and allow us time with his brother. But what I don't think about is the stress of it all and that puts a smile on my face and a warm feeling in my heart. Because despite all that Zachary and our family has been through we have not allowed it to define us or Zachary.
We love you Zachary and because of you we keep moving forward!
Feb. 2006: Update on Zachary’s Progress
In our last newsletter we updated you on Zachary’s condition and, as most of you remember, fall of 2003 through winter 2004 was a very rough time for Zachary medically. He had 10 shunt malfunctions and revisions and was battling frequent seizures. These, combined with his inability to produce ACTH—the hormone that signals the body to make stress (cortisol) hormone—put Zachary in several dangerous medical situations.
Since our last update, Zachary’s shunt has been working very well (Thank you God!). Although he is still having long and severe seizures, they are further and further apart. We actually went five months without one seizure—Hooray! The absence of the ACTH hormone has presented the majority of our challenges, but Zachary has toughed out the shots and the visits to the hospitals like a champion. The absence of the ACTH doesn’t allow Zach’s body to create cortisol the way you and I create cortisol. If we do not know that he is not feeling well, we can’t give him steroids to replace the ACTH and thus force him to create cortisol. This is where his current challenges lie; we have found him unconscious and had to rush him to the hospital for help.
Outside of medical complications, Zachary turned 6 years old in January and is currently enrolled in a special kindergarten program with an amazing teacher, principal and staff. He continues additional therapy at Easter Seals in speech/music, physical and occupational therapy, as well as more speech therapy at home with Miss Roberta. He is a great big brother and still loves his music…and did I mention he has a stubborn streak? I wonder if that comes from Mom or Dad.
2003: Update on Zachary’s Progress and Our Addition to the Family
When we started the foundation, Zachary was just 8 months old. It is hard to believe he is now 3 years old and in the Early Childhood Special Education Program in Lombard. Zachary is doing well, though he has had many ups and downs. He is taking his first steps and gaining more confidence. In the past few years Zachary has had some rough times and some incredible times.
Medically and visually, Zachary is currently stable and doing well. Over the last two years he has overcome many challenges; in June of 2001 he began having seizures. The first few seizures were related to malfunctioning of his shunt. Unfortunately, the seizures continued after the shunt was repaired twice, and so we added seizure medication to his daily regimen. In the fall of 2001 and the summer 2002, Zachary had critical problems with his stress (cortisol) hormone. On separate occasions he came down with pneumonia and measles, infections that were so hard on his body they started to shut his system down. Zachary’s doctors fought these infections with heavy doses of IV steroids. Our little angel fought his way through these infections like a champion.
Zachary’s next battle began in late summer 2002. We went to California to visit Dr. Borchert (Zach’s neuro-opthamologist). During our check-up, Dr. Borchert determined that Zach had lost a significant amount of vision in his right eye and was developing near-sightedness. We were sent home on a mission: glasses and patching. We are happy to say that, thanks to the patching and glasses, Zachary’s vision in his right eye has improved. We will see Dr. Borchert again in May, and we hope for a better check-up. We see an improvement in Zach’s day-to-day activities. We believe he sees about 3-10 feet with no peripheral vision. We look forward to Dr. Borchert’s exam for a more accurate assessment.
In regards to Zachary’s developmental status, we have a lot of progress to report, despite his medical setbacks. His third birthday in January was a milestone at the Katzbeck household. During the first three years of Zachary’s life we were blessed with the help of an Early Intervention team. Six of the most amazing therapists—Marty/Michelle (PT), Michelle P. (Vision), Darby (DT), Charyn (OT), Kim (Speech)—made the weekly trek to our home to help us help Zachary. Their dedication helped Zach to make amazing progress in the areas of speech, pretend play, walking and other fine motor skills. On January 22, these services changed over to the Early Childhood Center in Lombard where Zachary began Special Ed pre-school. We are fortunate to have found a wonderful program for Zach. Since starting at the Early Childhood program he has made significant improvement in his motor skills and has begun taking his first independent steps. We were overwhelmed the first time Zachary walked across the kitchen all by himself…just a little head passing the countertop and then little eyes looking at me telling me “dot com, Mommy” as he pointed at my computer on the kitchen counter.
Aside from his physical and developmental progress, Zachary has also developed the most amazing personality. He is incredibly happy, has a contagious laugh, has very strong opinions (not sure if that comes from his father or mother or both) and has become a great big brother to Benjamin, who joined our family on May 7, 2002. Benjamin is a very happy and healthy baby boy, and he is loved dearly by his big brother Zachary, who loves to hold Ben and give him hugs and kisses. Zachary also loves being outside, coloring, music, Elmo, Blue and Shrek (his favorite movie).
Benjamin recently started crawling, so we anticipate a lot of running around this summer. We are overjoyed by this thought. Thank you again for your prayers. It is our great Lord and your prayers that have brought us to this place in our journey.
We established the One Small Voice Foundation to increase funding for ONH research and to help change the future for children who may be affected by optic nerve disorders. Thanks to our many supporters, our mission has been a success to date. We’ve even been able to expand the scope of our mission to fund research for hydrocephalus being conducted at Children’s Memorial Chicago and a research database developed by the Hydrocephalus Association.
We believe that our Lord has chosen us to be Zachary’s parents for a reason. We believe that part of our Lord’s plan is the One Small Voice Foundation. It is our hope that our small voice and the money we raise for research can help children around the world see the world that we all take for granted each day and improve the treatment for children affected by hydrocephalus.
We thank you for your support and prayers.
Debbie, Kevin and Zachary Katzbeck
2002: Zak on TV!
Chicago, IL—Zaks mom and Dr. Robin Bowman discuss hydrocephalus, the Zak and Lizzie children’s book, and the One Small Voice Foundation with WGN Morning News anchor Roseanne Tellez. Zak provides the entertainment!