Ensuring all visually impaired children Bloom to their full potential

Meet Sarah Thacker The excitement and anticipation of our daughter being born was un-describable. She would be our first child. We were more than ready to see her beautiful little face. When that time came, tears of joy ran down our faces and for the first time I held her in my arms. In that moment I fully understood why having a child was the biggest blessing you could ever receive. Everything happened so quickly and then the next thing we knew the nurse was in our room informing us that she was scheduling for an eye specialist to come examine Sarahʼs eyes because they looked opaque, blue but clouded over. The doctor that came to see her at the hospital did not tell us what we wanted to hear. He wanted to examine her at Arkansas Childrenʼs Hospital. Fear came over Robert and I as we looked at our precious little girl and we could not help but worry. One week later she had an examination under anesthesia. Our family was in the waiting room with us to offer support. We anxiously waited to find out exactly what was wrong with Sarahʼs eyes. A nurse motioned for us to walk back with her and told us that our family could come as well. The doctor had finished and was ready to speak to us. I gritted my teeth as I followed the nurse and began to weep. In a few words we were told that our daughter was basically blind. There would be surgical procedures that might help her to have some vision but even if these were successful she would always be legally blind. He wanted her to see a cornea surgeon in Memphis, TN. We immediately got her in to see this surgeon. She was diagnosed with Anterior Segment Dysgenesis Syndrome which included Peterʼs Anomaly, Iris Coloboma, Cataracts, and Glaucoma. We decided for her to be put on a waiting list for a donor cornea which would enable her to have a cornea transplant. We were informed of the importance of acting quickly since she needed clear visual access in order for her vision to develop. We planned for her to have the cornea transplants in both eyes. Her right eye would be first and if it were to be successful we would proceed with placing her on the waiting list for surgery to be performed on her left eye. The chance of the cornea transplants failing in pediatric patients is high but we were willing to take this risk. She did have both transplants, numerous check-ups, and examinations under anesthesia in Memphis,TN. Ultimately, her transplants ended up both failing. She had cataracts removed as well as Ahmed glaucoma valves placed in both eyes to control the pressure. Boston Keratoprosthetic devices were placed in both of her eyes. This is a cornea implant that includes an artificial device as well as a donor cornea. She receives antibiotic drops to prevent infection from developing around the devices which could cause her to loose the vision that she has and receives steriod drops to try and keep scar tissue and irritation away. She wears contact lenses to protect the devices in her eyes and we are currently trying to get her used to wearing glasses as extra protection. Her left eye keeps growing scar tissue which prevents her from seeing other than what they think of as just a large blur of whatever she may be looking at. She is seeing with her right eye and it is doing very well. As of today, to my knowledge, there are still no surgeons in the state of Arkansas that are performing the Boston Keratoprosthetic surgeries. There are very few in the United States that perform this delicate surgery on pediatric patients. Receiving the information from a medical professional that your child is blind or visually impaired is devastating for a parent to hear. It was for us. Trying to cope with this news alone and not allowing others to know your true hurt and worry can cause many problems. Being honest about how you feel whether it be anger, hurt, fear or many other feelings will allow you to grow past these feelings and help your child have the very best opportunities for success in life. Sarah is now three years old. She is full of energy and entertains you with her fun personality. She is a bright and cheerful little girl. There is not a day that goes by that she is not singing a song, sometimes making up her own words to the tune of another song. She has a long life ahead of her with many choices to make. A visual impairment will not hold her back from anything that she sets her mind at doing. The world and all it has to offer is at her fingertips. We will continue to encourage her to reach for the stars in everything she does.   My Inspiration My daughter Parker, was 5 months old when we found out that she was blind. Her diagnosis is Optic Nerve Hyperplasia (ONH). I remember when the doctor told me she was blind, and that there was no cause and no cure, how stunned and numb I became. I walked out of the doctor’s office with no support, no answers, and no idea where to go from that point.   I believe I went into survival mode and was in a haze. A friend of my mother’s gave us some information on a school that helped children with disabilities. I started making phone calls for help and was grateful to find therapist for Parker. However, I didn’t know any other parents that had a blind child. I didn’t even know anyone that was blind. There was no one that could truly relate to what I was going through.   After Parker’s little sister Reagan was born, I started looking at my life and realized I needed to make changes. I went back to school and finished my undergrad and got my degree in Elementary Education. My marriage to their father fell apart. I decided that the best place for Parker to be educated would be at the Arkansas School for the Blind. This meant that we needed to move to Little Rock. I started my job hunt and interviewed with ASB. Not only did I get a job at ASB, but I found the support that I needed and the peace of mind that Parker was going to be ok.  I went on to get my Master’s of Special Education with an emphasis in teaching the visually impaired at UALR.   I taught fifth grade at ASB for 5 years. I loved it. However ASB started a toddler program and needed an Early Intervention Coordinator. I was very interested in not only working with blind and visually impaired babies, but also with their parents. I found that my being a parent of a visually impaired child meant so much to these parents. They were in need of support, networking, and making connections with other parents that were experiencing similar situations as them.   Mary Rose Bushland was one of the babies on my caseload. I met with her mom Patty and father Dave. Within 10 minutes of us all talking together, we literally decided to co-found the Arkansas Chapter of NAPVI. There was such a need for support of families like ours. We believe supporting the parents by having meetings, camps, fundraisers, newsletter, and other activities; we are better serving children across the state to ensure that they bloom to their full potential!   Note: I’m blessed to have Parker (who is now eleven) in my life. I thank God that He trusted me to raise her. She has been an inspiration to me and many others. Parker doesn’t mind being blind. She is a very happy child. She was in The Repertory Theatre’s production of The Miracle Worker, she’s been in a commercial, and is an avid Braille reader. When asked if she ever wished to have vision, her answer was this, “Yes, for at least five minutes. I want to see my momma’s face, a sunset at the ocean, and see my own face”. Parker deserves my best efforts.   -Shelli Moore Our Pretty Rose Some days come and go without us so much as recalling the date, while others change our lives forever. Those are the dates we remember. For us the date of April 27th, 2006 will remain forever etched in our memory. That was the day at the University of Wisconsin – Madison, the doctor told us that Mary Rose, our precious 4 month old baby girl, was blind. We felt as if our hearts were breaking as the tears rolled down our cheeks onto her beautiful blue eyes. The diagnosis was Leber's Congenital Amaurosis, which the doctor told us was a rare genetic disease. He was able to tell us nothing more. We were sent home feeling helpless and alone… It is just short of a year since that day. It is hard not to feel as if Mary Rose is looking back when her mom is singing “You are my Sunshine” to her. However, time heals and we now realize the many blessings that have been brought into our lives because of our little angel. As we watch her start to learn, despite not being able to see, we are amazed at how smart she is. More importantly we have been blessed to have the support of other parents who have visually impaired children. This has made a huge difference in both Mary Rose’s life as well as the rest of our family’s. In August of 2006, we moved to Arkansas. After looking around we realized that there was not a similar support organization for parents in place in the state. We knew that the best way we could continue to help our daughter was to find other parents who have either gone or are going through the journey of raising a visually impaired child. As a result we decided to start an organization to help parents of visually impaired children. We also realized that by doing so, not only would we be able to help Mary Rose, but other children like her. On January 11th, 2007, we founded a state chapter of NAPVI – the National Association for Parents of children with Visual Impairments. This is another date we will never forget as it is the day we decided to step out of the dark and make a difference in not only our pretty Rose’s life, but hopefully many others. The theme of our organization is “Ensuring that all visually impaired children Bloom to their full potential”. We would like to invite you to join us in making that possible. And hopefully together we will be able to create many wonderful memories for our visually impaired children and dates that we will remember forever. God Bless!   -Dave & Patty Bushland   Do you have a story to share with other parents? We want to read it! Send your inspiring story to Arkansas NAPVI by following this link: Share Your Story!