PERSONAL Stories

 

Aria’s Journey


 
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Aria’s journey began in October 2014, at just two months old.  Her parents noticed she was often having rapid eye movements and urged their pediatrician to send the family to a pediatric ophthalmologist.  The ophthalmologist contacted Associated Retinal Consultants immediately upon their first visit, and Aria was seen the very next day.  A week later, after her first exam under anesthesia, Aria was given the diagnosis of familial exudative vitreoretinopathy (FEVR). The news was devastating to the new parents who had never heard of the disease nor were they aware of anyone in their families with eye related issues.

Since then, Aria has had several procedures which include the placement of a scleral buckle on her left eye for partial retinal detachment, laser treatment and several exams under anesthesia. In February of 2016, Aria experienced a bout of glaucoma, which resulted in an ER visit and ultimately, the depletion of the vision in her left eye.

Aria is now 4 years old and is a ray of sunshine to everyone she meets.  She is an outgoing, kind, loving little girl who loves to make people laugh.  She enjoys going to school, dance class and playing with other kids.  

During the families first meeting with Dr. Anthony Capone, he told them that this was not a one-time visit, but would be a journey. The family is grateful for the doctors and staff of Associated Retinal Consultants, who have been with them every step of the way.

“We feel very blessed to have such a wonderful group of doctors so close to our home.  Their care and concern for our daughter is obvious, and the research they are doing is of the utmost importance.  We are excited about the work of the PRRF and have high hopes for the success for the first Hope for Vision Walk.  It is our personal goal to support the organization in any way we can with their quest for a cure of pediatric retinal diseases”.

                                    ---- Pasquale & Lisa LoVasco

 

Focus on Advocacy: Karen Hoogland


 
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Much to our surprise, we were having triplets. How on earth were we going to raise triplets? We were already blessed with a 2-year-old son. We knew the risk we faced having multiples. After letting this news absorb for a bit, we got used to the idea of this being fun…. challenging, but fun! The next six months were very risky. I was able to carry them to 26 weeks gestation. Due to complications with our baby boy, we had no other decision but to deliver all three so extremely early. We had no idea the roller coaster we were about to ride! They were born at 26 weeks gestation - one boy, two girls. Our little boy passed away at one month due to complications from prematurity. Our two girls survived. 

Now we had to figure out how to “do life” with our triplet survivor daughters ... one sighted, one blind. Juliana had many surgeries as an infant into her toddler years to keep the retinas attached. Retinopathy of Prematurity is her eye condition (ROP). The surgeries were always a success, but the healing process was not.

As soon as we faced the realization that she would live a life of complete darkness, our first worry was how she would be able to go to school. I’ll never forget the sweet kisses and cuddles I gave her, rocking her while whispering in her ear, “I will never let you down!” I was determined to never break that promise to her because I knew that as her mom, I would be her biggest cheerleader and advocate!    

Juliana’s Special Ed Team 

Her services began with Early On coming to the home when Juliana was an infant. I believe the social worker from the hospital got these services rolling. From Early On’s observations, they assigned her to a Teacher Consultant for the Visually Impaired (TCVI), Physical Therapist, and Occupational Therapist. She got these services at home until she was 18 months old. I then had to take her to a class to continue to receive these services 3 times a week. At age three … here we go … she started riding the special ed bus to the Early Childhood Center to start attending Early Childhood Special Education (ECSE). Buckling her in the bus seat for the very first time and watching that bus roll out of our driveway carrying my blind child was excruciating to my mom’s heart. It was terrifying learning that my daughter would be the first blind student to attend our school district. It was so hard to put my trust in the school system when it was an “unvisited avenue” for them. It took everything I had to not jump in my car and follow that bus to her new school! I had many sleepless nights leading up to her first bus ride to school. I often thought to myself, “How is this going to work? And how will they know what to do?” As her mom, even I was still figuring out what to do!

Being the nervous and anxiety driven person that I am, I decided that I wanted to learn Braille. I knew this would be her only form of literacy. I took a 16 week course through Michigan Department of Education Low Incidence Outreach (MDE-LIO). This was the best decision ever! I started introducing Juliana to it. I made it fun. I ordered the cute Braille board books from www.seedlings.org that had the print and pictures. I was diligently reading to her while running her finger over the bumps. I knew that if my other children enjoyed books by looking at the pictures and associating the words to each page, Juliana needed to be introduced to books in her form of literacy. 

As time went on with her in the ECSE program, I started to trust a little more. She had an amazing teacher who was very compassionate about her job, new at teaching a blind child, and absolutely grew to love my daughter. She and I had many conversations about what would work best for her learning environment. Juliana hated having sticky hands. I told her teacher to make sure she does the most sticky crafts possible to get her little “tactile feelers” acclimated. I remember having a conversation about fruit. Her teacher was discussing different kinds of fruit to the class. I mentioned to her that she should have some tactile play fruit or real fruit that Juliana could feel because she could not see the pictures. The fact that her teacher valued my insight, strategies, and suggestions gave me so much hope for Juliana’s future in school.

At this point, I decided that I needed to really get to know her Special Ed Team. This consisted of the Special Ed Director, Principal, Teacher, Occupational Therapist, Physical Therapist, Speech Therapist, Teacher Consultant for the Visually Impaired, and O&M Specialist. I wanted to know everybody, communicate regularly, compliment them on my daughter’s successes and have a great relationship with them all. I knew that we would be working with these professionals all throughout her schooling. I kept reminding myself, at times of anger and frustration, to do some deep breathing and to think before I spoke.  As the saying goes, I did not want to “bite the hand that fed us” and be “that” mom that always jumped across the table at the IEP meeting in a fit of rage. I knew that I had to keep my composure, be mature, and be my daughters best advocate!

 

On a Personal Note: The Halberts


 
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After having a healthy pregnancy and delivery, our world was turned upside down when our daughter, Presley, was diagnosed with Stage 5B FEVR (bilateral retinal detachment) a few days after she was born and was completely blind. 

During her first week of life, we saw multiple doctors in Texas who either did not feel comfortable operating on her given her age or did not feel surgery was even an option due to the severity of the presentation in her eyes. We were told her eyes would not grow so they would always be small and because she was already the most severe stage, nothing in her eyes would change. Heartbroken and searching for any sliver of hope, it became clear to us that we needed to travel to Detroit to see one of the “FEVR experts,” Dr. Trese or Dr. Capone.

After our initial visit with Dr. Capone a few weeks later, we knew we were right where we needed to be. He has been a godsend to us both medically and emotionally and was the first person who gave us hope. He has taken the time to thoroughly educate us on this rare disease and allow us to ask as many questions as we need.

We made three trips to Detroit before Presley turned one for three rounds of surgeries on each eye. While we initially were told her eyes would not grow, when we went to see Dr. Capone, her eyes had gone from being small for her age to being huge due to fluid buildup in her eyes. He saved her from getting Glaucoma by relieving pressure and protecting her optic nerves.  Dr. Capone had to remove both lenses and more and more of her iris with each surgery. When he went in for the second surgery on the first eye, he thought we had won the battle but lost the war. Her retina was sinking back slowly like we had hoped but there was no blood flow to the retina, meaning the retina was underdeveloped. Instead of stopping there, Dr. Capone kept going. After removing more and more scar tissue and draining dried blood, blood vessels finally appeared. Dr. Capone does not give up until it is not safe to continue and always has the child’s best interest in mind. His commitment and passion to help these kids, who often times do not have a positive prognosis, is something that truly leaves me speechless. 

Managing your expectations makes the smallest things feel like the biggest victories. Finding a doctor like Dr. Capone was a victory. Draining the fluid before she got Glaucoma and her optic nerve was damaged was another victory. Regardless of any light or vision we may or may not get, we are at peace with that.

Now two years old, Presley is a sweet, happy, and very chatty toddler. Her auditory processing and auditory memory is incredible. She has been learning how to walk with a cane and will soon begin learning Braille. She amazes us every day with how easily she picks things up and adapts. While we would give anything for Presley to be able to see, she has given us a new perspective on life and changed our world for the better. We are so thankful for Dr. Capone and the work that PRRF is doing to help families like us.

 

Meet Board member Charles “Chuck” Walls


 
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When Chuck’s third child, Collin, sat too close to the TV, he and his wife thought that was merely unusual. The day after Christmas, when Collin was around 5 years old, the family learned that he had congenital X-Linked retinoschisis, splitting of the retinal layers, and there was no treatment and no cure. It was predicted that Collin would eventually be blind.

Chuck immediately took a leave of two weeks from the army where he was serving as a LT. Col. as an experimental test pilot and sat at the computer to find out what could be done to help his son. Dr. Michael Trese’s name continued to pop up and soon the Walls had an appointment with him. Dr. Trese evaluated Collin and discussed research that was ongoing with a synthetic schisin that he was hoping might lead to a treatment. Two years later they met with other staff to learn about working with children with vision problems because his wife is a special needs teacher and could put to good use information on helping children with low vision. Then he joined the PRRF Board.

Chuck said they have struggled with finding a balance of letting Collin do all the contact sports he so loves and yet protecting his vision. He feels there is so much research to do which will help prevent or cure pediatric vision problems and wants to do more, faster.

For that reason, he is reaching out to families with children who have vision impairment in order to connect and inform them of the advances which are happening. He wants to build teams of families and invites parents to contact him at (757)338-1775 or cdwalls@yahoo.com.

 

Meet Nate, A Budding Musician


 
 
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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.

 
 
 
 

A Letter From Bev Hughes


 
 
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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.

 
 
 
 

Letter From The Abbruzzese Family


 
 
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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.