Jeremy Matta
Jeremy woke up the morning of March 2015 with sudden vision loss in his left eye. After a visit to the emergency room and hospital admission, it was determined that the cause was Optic Nerve Drusen. Jeremy’s mother is legally blind due to this same condition. The condition has affected Jeremy’s left eye as well. Unfortunately, the condition is untreatable.
Jeremy, who is 11 years old and an only child, is described by his mother as being a good student and a great story teller. Before his vision loss, he loved to read. Reading is now extremely difficult. He also loves to play video games, play with friends, run, swim and ride the tube on his grandpa’s boat. Unfortunately, all of these activities are becoming increasingly difficult as his eyesight worsens. Everyday activities become more difficult as his vision loss progresses. Being in a crowded area, seeing in low lighting, stepping on an escalator and walking in an unfamiliar areas are challenging. All of these challenges have taken an emotional toll on Jeremy. Though he has great sadness, he also has a strong will! It is Jeremy and his mother’s hope that someday a cure can be found that will stop or prevent loss and help others in this situation.
With your support, the Trinity Rose Foundation is able to provide Jeremy with a CCTV with a carrying case as well as a compact, portable CCTV. A CCTV is a video magnifier that allow the visually impaired to read materials placed under a camera while also allowing the reader to change background colors which allows them to improve the contrast of materials more suitable to their visual acuity.
At three months old, Luke developed a bilateral nystagmus. After testing, the doctors discovered that Luke had other visual issues that quickly required 2 eye muscle surgeries. Luke’s condition, achromatopsia, is also known as being ‘day blind.’ In the light of day, he is severely photophobic – the light causing pain to the eyes due to light exposure. In spite of this, Luke does his best to run and play in places where he is familiar. Inside the classroom, he has less obstacles, however, he still has hurdles to overcome. He enjoys reading and exploring details in the objects with a CCTV at school. People always describe Luke as such a happy, charismatic little boy. In his classroom, his classmates gravitate to Luke. Despite his disabilities, Luke has thrived and grown so much because he has been exposed to so many tools that give him the ability to see the world as close to typical as possible.
– Written by Kyle, Luke’s father
With your support, the Trinity Rose Foundation is able to provide Luke with a CCTV for home. A CCTV is a video magnifier that allow the visually impaired to read materials placed under a camera while also allowing the reader to change background colors which allows them to improve the contrast of materials more suitable to their visual acuity.
Luke Rakak
Vincent Harper
Vincent Harper has ROP (Retinopathy of Prematurity) with detached retinas. He was born at approximately 25 to 28 weeks gestation with no prenatal care. He was treated in the NICU at Yale New Haven in Connecticut for six months. He was then transported to Columbia Presbyterian in New York to see a retina specialist for treatment. Premature babies are typically confined to oxygen-rich environments which hinder the structures of the child’s eyes.
Nothing could be done for Vincent’s right eye. He had several surgeries to try to re-attach the retina in his left eye, include a Scleral Buckle to hold the retina in place. Unfortunately, the buckles needed to be removed to allow the eye to grow. As a result, the retina continued to detach despite the best efforts of the specialists. At age 2 the decision was made to discontinue surgery as they were traumatic for Vincent, with no noticeable improvements. While there is no usable vision today, when Vincent was playing with his 14 year old sister last year, she found that Vincent was able to see a full screen of colors on a computer screen. Vincent wears protective glasses with transition lenses because his pupils do not dilate and he has no way to filter the amount of sunlight when outside.
With your support, the Trinity Rose Foundation is able to provide Vincent a comprehensive evaluation through the Perkins School in Cambridge, MA plus travel expenses to the assessment.
In 2009, the Trinity Rose Foundation introduced Breyanna as one of our early recipients. Starting around the age of 10 years old, Breyanna found out that she had FEVR (the same disease that Trinity has). We invited Breyanna, then 14, to speak to the crowd and tell her story and during the dinner presentation, Breyanna received a standing ovation for her braveness in sharing her struggles of facing blindness
When Breyanna was initially diagnosed, the vision in her left eye was 20/400 with her right eye as 20/60. In other words, what a person with normal vision can see at 400 feet away, Breyanna had to be 20 feet away to see the same object. Since that time, Breyanna has undergone over 20 surgeries varying from laser to vitrectomy to cataract removals.
Up until last year, Breyanna’s right eye had remained pretty stable. Just recently, however, she’s had to have even more laser surgery, further cataract removal and yet another vitrectomy. Until this past year, Breyanna was able to drive, attend college full-time and work on the side. However, with the recent surgeries and ongoing vision loss, she has to postpone college and take medical leave from work and, in January of this past year, the state of New York revoked her license, as well.
With your support, the Trinity Rose Foundation is able to provide Breyanna with financial support to help with travel costs to the surgeons as well as helping with some of the unpaid medical expenses that she has incurred.
