PERSONAL Stories

 

Meet Nate, A Budding Musician


 
 

Nate, an active seven-year-old, lives with his mom, dad, and two older brothers. A first grader, Nate is bright, opinionated but with an enthusiasm to learn and experience anything that comes his way. He also has Norrie Disease and is blind.

Diagnosed when he was a newborn, Nate was referred by his ophthalmologist to Dr. Antonio Capone, Jr. who he visited when he was three months old. At that time, he had surgery to remove the lenses from his eyes and the blood from behind his retinas, in the hope that they would reattach. Since his initial surgery, they have visited with Dr. Capone once a year. 

When asked, Nate may not be willing to say he has a favorite subject, but he does enjoy that and approaches his classroom with a quick intelligence and exceptional memory.  He has an aide in the classroom. He reads at grade level and is proficient in Braille.

Nate loves music. he began to take piano lessons when he was 5 years old. He studies the solfége method of musical training period with a great 'ear' for music, he has no problem reproducing the sounds that his teacher plays for him and was able to reproduce on the piano the classic 'Lightly Row' after he heard it at a concert.  A greater challenge is using the proper fingering to play the piano, but he has been practicing and is able to apply that skill when he is learning Braille.

Nate has many pictures and approaches them with the same skill and sense of humor.  He loves to play Bop It! Simon, an electric toy that is great for visually impaired children. He has taken up karate with his brothers and is enjoying the experience. A trampoline and an exercise ball challenge his balance and since a body in space.  Life will have many challenges for Nate, but with his cheerful attitude and desire to enjoy what he encounters, he will, no doubt, succeed.

Nate loves music. he began to take piano lessons when he was 5 years old. He studies the solfége method of musical training period with a great 'ear' for music, he has no problem reproducing the sounds that his teacher plays for him and was able to reproduce on the piano the classic 'Lightly Row' after he heard it at a concert.  A greater challenge is using the proper fingering to play the piano, but he has been practicing and is able to apply that skill when he is learning Braille.

Nate has many pictures and approaches them with the same skill and sense of humor.  He loves to play Bop It! Simon, an electric toy that is great for visually impaired children. He has taken up karate with his brothers and is enjoying the experience. A trampoline and an exercise ball challenge his balance and since a body in space.  Life will have many challenges for Nate, but with his cheerful attitude and desire to enjoy what he encounters, he will, no doubt, succeed.

 

 
 
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A Letter From Bev Hughes


 
 

My husband Rob and I were absolutely thrilled to welcome our third baby girl Rachael into our family. When she was 5 weeks old, we noticed she didn't respond like her older sisters, Sophie, 5 and Isla, 3, when they were the same age. At 12 weeks old we took her to an ophthalmologist where we were told she was legally blind. Our world came crashing down.  She was diagnosed with Familial Exudative Vitreoretinopathy (FEVR).

My sister Kay, who is an optometrist, and I immediately began researching FEVR. We noticed many of the FEVR articles we came across were written by Dr. Trese. Rachael had excellent care by her retinal surgeon in Sydney, who also highly recommended Dr. Trese having worked with him in the past. Rob and I knew we had to take Rachael to see him.

In July 2015, Kay, Rachael (now 5 months old) and I went to Royal Oak, Michigan, while Rob stayed in Sydney to look after Sophie and Isla. Dr. Trese examined Rachael under a general anesthetic and confirmed the diagnosis and treatment plan of our doctors in Sydney.  I came home inspired and determined to give Rachael every opportunity in life that her older sisters have and encourage her to do all the things she wants to do, just like we do with Sophie and Isla. 

In July 2015, Kay, Rachael (now 5 months old) and I went to Royal Oak, Michigan, while Rob stayed in Sydney to look after Sophie and Isla. Dr. Trese examined Rachael under a general anesthetic and confirmed the diagnosis and treatment plan of our doctors in Sydney.  I came home inspired and determined to give Rachael every opportunity in life that her older sisters have and encourage her to do all the things she wants to do, just like we do with Sophie and Isla. 

Rachael's left eye has a retinal fold across the macula. Her right eye has dragging and pulling of the retina. She uses this eye most of the time for her vision. Rachael is on target in meeting her milestones. Her eyes are stable today and her functional vision is better than what we were first told when she was diagnosed. She has come so far and has really surprised us. Rachael just celebrated her first birthday. Her favorite things to do are the moment are play peekaboo, laugh and play with her sisters who adore her, drop food on the floor, play with balls, water play and climb upstairs. I can't believe how the year has flown. Whilst it wasn't quite the year we had expected, Rob and I feel so blessed to her in our family. She has been such a joy and delight to us and we are loving watching her grow and explore.

 
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Letter From The Abbruzzese Family


 
 

My family and I held our annual “Eye on the Future” soup cook-off and basket raffle on November 21, 2015.  This year, we had new t-shirts printed and also added a bracelet hand-stamped by a local jewelry maker. The bracelet has a “shine” disc, a little star charm, and disc which is hand-stamped “love” in Braille. They sell for $20 and $8 of that goes to the fundraiser. We will continue to sell them throughout the year. Our daughter, Julianna, also makes Braille art which she sold at the event. 

The fundraiser was a great success and we are proud to have raised $5,840 for research.  Please find the checks enclosed totaling this amount. Both of our daughters have been diagnosed with FEVR. Therefore, you can understand why this foundation is dear to our hearts. We appreciated all of your hard work and are hopeful for a cure in the future.

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