Nicholas is our youngest child; he has a sister who is three years his senior. He was delivered by repeat C-Section in September of 1996. My pregnancy was normal so I had no indication that my child was not going to be a perfectly healthy child.
Before leaving the hospital Nicholas was seen by an urologist. The urologist informed us that Nicholas was born with undescended testicles, which is a common condition in boys. We were still a little scared and concerned but we took our son home with the hope that everything would be fine. We made arrangements for a follow up meeting with him 10 days later.
We received a call from our pediatrician’s office about a week later. We were informed that a blood test revealed a problem with one of Nicholas' chromosomes. The doctor did not go into much detail. He did recommend that we schedule an appointment with Genetics. We were even more scared, confused and in need of some answers. It was at the follow up appointment with urology that everything became much clearer, or vaguer, depending how you look at things.
I took Nicholas to the urology appointment alone. The urologist told me Nicholas was born with what doctors call WAGR Syndrome, resulting from a deletion of the short arm of his 11th chromosome. I was not prepared for what I was about to hear. The doctor spoke about kidney cancer, a visual impairment, possible retardation and so much more. Nicholas was crying and my heart was breaking inside. I barely had enough strength or composure to drive home from the doctor's office.
Nicholas was seen in Genetics before he was a month old. Both my husband and I submitted to a blood test for karyotyping. The tests came back normal, which meant we had not passed anything on to Nicholas. Nicholas' deletion resulted from a sporadic mutation in his chromosome.
The first few months of Nicholas' life were quite a blur. He wasn't a very good eater. He would only drink a couple of ounces of formula at a time and I was feeding him every 2 hours or so. He was very gassy and would cramp up quite often in pain. Nicholas was not a good sleeper either. He basically slept while he was being held. For the first four months I slept holding him in our rocker recliner.
Nicholas had his first visit in Ophthalmology when he was 2˝ months old. We were told he would have visual problems resulting from the aniridia, nystagmus and cataract in each eye. We were also told his vision would probably be between 20/200-20/400 or worse. In any case, he would be legally blind. But what exactly did 20/200-20/400 vision mean? We left the doctor's office with more questions then answers.
During these few months we experienced every emotion possible - grief, guilt, fear/anxiety, resentment, denial and anger. It took some time for everything to sink in. After that, we decided we had to do what is best for Nicholas. For us, this meant -"Knowledge is Power".
We quickly realized that Nicholas was going to need some extra help if he was going to reach his fullest potential. We contacted our school district and they put us in contact with our local Early Intervention program. Nicholas started in Early Intervention when he was four months old. His teacher came out for one hour home visits twice a week. Nicholas was making great strides and progress.
I began calling organization after organization. I spent hours on the internet researching Aniridia, WAGR Syndrome and chromosome disorders looking for answers. Needless to say, there was some but not a lot of information available back then on these rare conditions. When we would come across information we quickly shared it with Nicholas' doctors. They welcomed the information, as they too were learning about this condition.
Because of the great risk of Wilms' Tumor, Nicholas was getting routine ultrasounds every three months. It was during one of these routing tests that revealed he had a 2" mass on his left kidney. Our worst nightmare had come true. I did not want to believe what I was seeing on the ultrasound or hearing from the doctor. I cried. Nicholas was only seven months old. I knew that it was not fair for someone that small to have to endure and go through what lied ahead.
Surgery was scheduled within two days of detection and the tumor was successfully removed. The urologist performing the surgery managed to save his kidney by doing partial nephrectomy. The tumor was detected in the early stage, so prognosis was good. Nicholas spent four days in the Pediatric Intensive Care Unit (PICU) and another four days on the pediatric floor. He received his first doses of chemotherapy before leaving the hospital. Nicholas went through an 18 week protocol of chemotherapy. During this time, he was given the drugs Dactinomyacin and Vincristine.
We were lucky in that the doses of medications did not really affect him too badly. His hair did not fall out, although he really did not have too much at this time. He did not get sick either. He did experience a few pains every now and again and the pain seemed to be worse at night than during the day. Nicholas' chemotherapy treatment ended just shortly before his first birthday. Needless to say, we had a lot to be thankful for and planned a big celebration for him.
Nicholas had numerous bouts with constant fluid build up in his ears. When he was just over a year old, a hearing test revealed that he had over a 45% hearing loss in each ear. We were already in the process of scheduling Nicholas for surgery to bring down his testicles in February of 1997. We decided it would be best for him to have PE tubes inserted at the same time. Nicholas was about 1˝ years old when he had his first orchiopexy and his first set of PE tubes inserted.
Nicholas' testes were very high up in his abdomen. The urologist performing the surgery would have to actually cut one of the arteries in order to get them down into the scrotum. Because of this, he decided it would be best to only bring down one teste at a time. The doctor wanted to make sure that the first teste survived and functioned normally before bringing down the other one.
Three months later, Nicholas had his third surgery and the other teste was brought down. While Nicholas was under anesthesia he also had a Glaucoma test and a repeat hearing test. Both the pressure test and hearing test were normal. We were very relieved.
Nicholas was developing into a very active little boy. His functional vision was far better then we had ever thought it was going to be. To look at him from a distance you would see just a regular little boy; running around, getting into mischief and having a great time. It was only when you got up close and looked at his eyes that you could possibly tell something was wrong with them. He was making excellent developmental progress. However, we were always aware of the possible association with cognitive delays. We looked for any and all signs that would indicate possible delays.
Nicholas was almost two years old and still not speaking more than three or four words. Nicholas had been through so much, and we really weren't sure if the partial hearing loss contributed to his lack of speech development prior to him getting the tubes. In any case, we thought teaching him sign language would be a good alternative avenue for communication. He was a quick study and did very well picking up new signs. Still very concerned with his lack of speech development, we opted to enroll him in a six week group speech therapy session through our medical insurance plan. The progress was very slow. After the group session ended we decided we would try to work with Nicholas at home ourselves.
In December 1998, we decided it would be best for Nicholas to be checked out once again by ENT (Ear, Nose & Throat). He was a very congested little boy from birth. He seemed to have the most difficulties breathing at night. He snored very loudly and was a very restless sleeper. We had made several inquiries about the possibility of him having sleep apnea. We were always told not to worry about it. Finally, his ENT agreed to perform a test in which a scope was inserted in Nicholas' nose. The scope showed that his adenoids were blocking a large portion of his breathing passage way. His tonsils were also very large for a boy his age. We decided it would be most beneficial for Nicholas to have surgery to have both his tonsils and adenoids removed.
In January 1999, Nicholas had his fourth surgery to have the T&A. He also had another pressure test on his eyes. The surgery and pressure test was a success.
Nicholas exited the Early Intervention Home school program in the spring of 1999. We had him enrolled in a private one hour weekly Speech Therapy program which lasted about 12 weeks. Over the course of the 12 weeks we saw significant progress in Nicholas' ability to speak and initiate words. It was a very long process, but we were very hopeful. By the end of the summer Nicholas’ vocabulary had grew significantly.
Nicholas began attending a school based special educational program in the fall of 1999 for four days a week. He did very well, made a lot of progress and adjusted to school life away from home. He especially loved riding the bus to and from school.
For the 2000-2001 & 2001-2002 school year Nicholas was enrolled in a visually impaired preschool program along with five other children. He had an amazing Visually Impaired teacher and Nicholas did very well in this program.
Because of Nicholas' frequent battles with reoccurring sinus problems we opted to have him undergo a CT scan of his sinus area in December, 2000. The CT scan however, did not show any abnormalities in his sinus area. He also went through allergy testing in the fall of 2000. Again, no allergies were detected.
Nicholas had another EUA (exam under anesthesia) at the end of June 2001. He also had a second set of PE tubes inserted into his ears. The tube in the right ear was in tact. However, the tube in the left ear fell out after a month. In June of 2002 Nicholas had surgery to insert another PE tube in his left ear.
Nicholas was mainstreamed into a general education Kindergarten classroom for half the day and spent the other half in a Visual Impaired resource room. Nicholas made progress; however, by the end of the year we could tell he was significantly behind in meeting the goals of an average kindergartener. The school district spoke of retention but this was not even an option for us. When we met for Nicholas' IEP to discuss his placement for the following year, the school district suggested mainstreaming for first grade with minimal VI support. To us, this was the complete opposite of retention. The school district was not willing to discuss alternate placement. We felt Nicholas' cognitive needs in addition to his visually needs were not being addressed so we looked for a program in a neighboring school district.
We elected to apply to a neighboring district for Schools of Choice and Nicholas was accepted. In the fall of 2003 he started first grade in a self contained cognitive impaired classroom along with seven other students. Although the numbers of students change over the years, he was in this same class with the same teacher through 5th grade.
Nicholas remained in the CI room for all his core academic classes. He was mainstreamed with general education students for all the specials: art, music, and gym. He received Occupational Therapy, Speech Therapy, Orientation and Mobility services and had a VI consultant that worked with him and his teacher.
In January, 2004 his pediatrician spotted a tube inside his left ear, not in the ear canal. This was after we had been told by various doctors that the tube had fallen out of this ear sometime during the summer of 2003. Nicholas ENT confirmed that the tube fell inside his ear, not out. This in fact had been contributing to some of the ear/sinus infections he had been having. So in March, 2004 Nicholas had and out patient surgical operation to remove the old tube from his left ear and a new tube was inserted.
For middle school Nicholas moved to a new school district. He was placed into a cognitive impaired classroom with about 13 other students. The focus of this program was functional academics and living skills. Nicholas transitioned into middle school life without any problems. His speech services were discontinued but he still received OT, O&M and VI services. Unfortunately, my husband (Clem) and I had a hard time with the lack of communication from his teachers.
Nicholas has behavior issues with anxiety, OCD and tantrums. Clem and I talked about trying medication to curtail some of these issues. I struggled with the thought of putting Nicholas on medication and was unable to get passed the idea for the longest time. In the summer of 2005 Nicholas and I met with a child psychiatrist and we agreed that Nicholas would probably benefit from medication intervention. After going over all of his issues and needs we settled on Prozac. We started Nicholas off on a low dose and increased the daily dose to about 1 ˝ tsp. We began to notice a considerable decrease in his anxiety levels. He did not seem to get upset about the little things like he once did. However, he still liked to be in control, still liked to be the boss, make decisions and was very rigid. We continued to watch his aggressive behaviors and followed up with a new Psychiatrist later that fall.
We decided to go back to seeing a doctor for Exceptional Children. She was also a Psychiatrist and could prescribe medication for his behavior, anxiety and aggression. She did not like Prozac because it might lead to increased appetite. She recommended that we switch to Zoloft. So we spent the next few weeks weaning him off Prozac and increasing his Zoloft medication. Nicholas continues to take the generic form of Zoloft.
The onset of puberty brought out more aggressive behaviors. Nicholas has had severe episodes where his aggressive behaviors have become a danger to himself and others and the local police department had to be called. As parents, it is very difficult to see Nicholas in this state and unable to calm him down. New medications (Trileptal and Intuniv) were added in hopes of decreasing the meltdowns. Nicholas also began to see a Psychologist for behavior intervention.
Nicholas moved up into a high school cognitive impaired program for the 2010-2011 school year. Once again, he transitioned into the new program without any problems. He receives OT, O&M and VI services. Nicholas will eventually enter a school based job training program.
Nicholas started taking therapeutic horseback riding lessons when he was nine years old. We’ve enjoyed watching him develop the confidence and skills of horseback riding over the years. He is a natural in the saddle. He looks forward to riding in every session. In August of 2006 he was able to show off his skills in the local county fair where he took second place.
Nicholas is a very active little boy. He played in a VIP AYSO soccer league for a few years when he was younger. The league was for special needs children. Nicholas had a great time playing soccer and his favorite position was goalie. He loves to ride his bike. For Christmas in 2005 Santa Claus brought him an adult three wheel bike. He enjoyed going on long bike rides with his new bike. However, later that year Nicholas spent a week teaching himself how to ride a two wheel bike. We were very proud of him. His hard work and determination once again, paid off. Today he gets to choose which bike he wants to ride. His balance has improved significantly over the years, which we attribute to horseback riding.
Nicholas loves to watch sports and the Detroit Red Wings and Detroit Tigers are two of his favorite sports teams. He also enjoys watching Food Network shows, reality TV, and laughing to America’s Funniest Videos. He enjoys music, and playing outside. He also likes to bowl and has bowled on different leagues over the years.
Nicholas has given us the courage and determination to go on. He faces every challenge with a smile. When we look into his eyes we see him for the special person he is to be. His determination and sense of humor will get him through life and allow him to be his best. It is through him that we are able to see the true meaning of life. Not to take things for granted and to make the most of every day. We love Nicholas and his sister with all our heart. We take great pride in the fact that the good Lord has blessed us with our children.
As you know WAGR is an acronym. For us, WAGR stands for Winning Attitudes, Great Rewards. For a winning attitude is what it takes for our children to succeed and be their best. Of course, it's not always easy keeping a positive attitude, especially when things start getting you down. Sometimes we feel that we are constantly fighting for our child. We fight to get him the best education, fight to get him the best medical treatment and even fight to keep our heads up at times. However, it's during these hard times we’ve learned to lean on others; our family, our faith, co-workers and friends have helped get us through many rough times. The reward for us is seeing Nicholas happy, seeing him thrive, and knowing that we are doing everything we can to make his life the best that it can be. Will the fighting ever end, probably not.
But if we can win the little battles, we WILL win the war. That's the best we can hope for.
We thank God for all of the people we have come in contact with as a result of this condition. We have never been alone. So many people - our family, friends and even strangers have come to our aide with comfort, compassion and support. With you, we triumph through the good times and walk hand in hand through the bad. The road ahead will be long and full of bumps. We will get through all of this together.
In June of 2001 we traveled to Manassas, Virginia for our first WAGR Weekend. We spent the weekend with several other WAGR families that traveled from all over the world. Meeting everyone, putting a face to the name, seeing all of the children was the most wonderful experience imaginable. The weekend went by too quickly and it was hard to say good-bye. We look forward to attending WAGR Weekend every summer; reuniting with old friends and meeting new families for the first time.
Shortly after 9/11 we traveled down to Orlando, Florida courtesy of the Make-A-Wish foundation. Nicholas was granted a wish to see Mickey Mouse. His wish came true and we spent a magical week in sunny Florida where we stayed at Give Kids the World Village. We visited the Magic Kingdom, Universal Studios/Island of Adventures, Sea World and MGM Studios. Nicholas not only got to meet Mickey Mouse but many other Disney characters, Barney and Friends, The Cat in the Hat and others. Nicholas enjoyed riding on the Carousel, Dumbo, Splash Mountain, Arctic Adventure, Thunder Mountain and more. We will cherish the memories for years to come.
We are so thankful to be part of the IWSA. It is great network of parents sharing information, asking questions and constantly searching for ways to make a difference in the lives of our children. We’ve come a long way over the years and we know the best is yet to come. Thank you to everyone, for making such an impact in our lives.
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