Support for Wrenley
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Thank you for your interest in helping support our fundraiser for our daughter Wrenley Ice. Wrenley was born with no eyes or optic nerve meaning she is completely blind. She will have to have surgery to unfuse her eyelids and put in spacers so her facial structure develops properly. She will eventually get glass eyes once she is older. Wrenley sees numerous specialists including an endocrinologist, neurologist, neonatologist, and ophthalmologist. We have to travel to St. Louis for these appointments which is 316 miles round trip and for her treatments. We are creating this fundraiser to help with the costs of her treatments as well as gas money for her appointments and for any additional aides she can use since she will be completely blind with no chance of regaining her vision. If you are interested in our full story I have it listed below. Thank you for all of your love and support! ❤️
Wrenley was born on 11/06/2023. I had a normal pregnancy and was assured that I had a healthy baby and that there were no issues with my pregnancy. I had all the ultrasounds including 3D ultrasounds and genetic testing and everything was normal. When Wrenley was born, we noticed that she wasn’t opening her eyes. When I asked the nurses they told me that her eyelids looked small and that the pediatrician would take a look in the morning. In the morning, the on call pediatrician examined Wrenley and gave us the heartbreaking news that she did not have any eyes. My husband and I were devastated at the thought of our child being blind. We were sent to St. Louis Children’s Hospital where we stayed 9 days in the NICU. During this time, Wrenley was evaluated by neurology, endocrinology, ophthalmology, cardio, genetics, occupational therapy, and speech therapy. They were able to determine that Wrenley has no eye tissue, known as Anophthalmia. Wrenley also did not develop an optic nerve and does not produce cortisol. Wrenley was diagnosed with Septo-Optic Dysplasia. The genetic testing showed that Wrenley had what’s called haploinsufficiency of PRR12. There is very limited research on this and there are only 24 other known cases. They were able to determine that there was nothing in our genes that caused the mutation and that it was a random occurrence. Wrenley is otherwise happy and healthy, but she is at increased risk of developmental disabilities and delays due to her condition. We are hopeful that with resources, aides, support, and love that she will thrive and have a long and happy life. If you are more interested in her conditions I have posted links about them below.
Anophthalmia
https://www.cdc.gov/ncbddd/birthdefects/anophthalmia-microphthalmia.html#:~:text=Anophthalmia%20is%20a%20birth%20defect,fully%2C%20so%20they%20are%20small.
Septo-Optic Dysplasia
https://medlineplus.gov/genetics/condition/septo-optic-dysplasia/#:~:text=Septo%2Doptic%20dysplasia%20is%20a,the%20brain%2C%20and%20pituitary%20hypoplasia.
Haploinsufficiency of PRR12
https://www.nature.com/articles/s41436-021-01129-6
Wrenley was born on 11/06/2023. I had a normal pregnancy and was assured that I had a healthy baby and that there were no issues with my pregnancy. I had all the ultrasounds including 3D ultrasounds and genetic testing and everything was normal. When Wrenley was born, we noticed that she wasn’t opening her eyes. When I asked the nurses they told me that her eyelids looked small and that the pediatrician would take a look in the morning. In the morning, the on call pediatrician examined Wrenley and gave us the heartbreaking news that she did not have any eyes. My husband and I were devastated at the thought of our child being blind. We were sent to St. Louis Children’s Hospital where we stayed 9 days in the NICU. During this time, Wrenley was evaluated by neurology, endocrinology, ophthalmology, cardio, genetics, occupational therapy, and speech therapy. They were able to determine that Wrenley has no eye tissue, known as Anophthalmia. Wrenley also did not develop an optic nerve and does not produce cortisol. Wrenley was diagnosed with Septo-Optic Dysplasia. The genetic testing showed that Wrenley had what’s called haploinsufficiency of PRR12. There is very limited research on this and there are only 24 other known cases. They were able to determine that there was nothing in our genes that caused the mutation and that it was a random occurrence. Wrenley is otherwise happy and healthy, but she is at increased risk of developmental disabilities and delays due to her condition. We are hopeful that with resources, aides, support, and love that she will thrive and have a long and happy life. If you are more interested in her conditions I have posted links about them below.
Anophthalmia
https://www.cdc.gov/ncbddd/birthdefects/anophthalmia-microphthalmia.html#:~:text=Anophthalmia%20is%20a%20birth%20defect,fully%2C%20so%20they%20are%20small.
Septo-Optic Dysplasia
https://medlineplus.gov/genetics/condition/septo-optic-dysplasia/#:~:text=Septo%2Doptic%20dysplasia%20is%20a,the%20brain%2C%20and%20pituitary%20hypoplasia.
Haploinsufficiency of PRR12
https://www.nature.com/articles/s41436-021-01129-6
Fundraising team: Team fundraiser (4)
Taylor Ice
Organiser
Poplar Bluff, MO
Robert Ice
Team member
Paul Lourance
Team member
Stacie Lourance
Team member
