Diagnosis of Autoimmune Retinopathy: Becky’s Story

As you may know, our son Kai was recently diagnosed with Autoimmune Retinopathy. When we received the new diagnosis we were shocked and we are still adapting to the news. Thankfully, we had already built a strong network through this blog and our social media presence. We reached out to our community and thanks to your shares, our post was viewed more than 8,000 times.  Autoimmune Retinopathy (AIR) is extremely rare, but with your help, we were able to connect with 12 people who are navigating AIR and were pointed to a FB Community for Autoimmune Retinopathy with 166 members (#Rare). Becky is one of the people who immediately responded to our pleas for help with an abundance of support and information. I am honored she agreed to share her story here. Thank you Becky.

Guest post by Becky Jayakumar

Hello, I am Becky Jayakumar and I was recently diagnosed with autoimmune retinopathy (AIR).  AIR is a rare autoimmune disease that destroys the retinal cells of the eye leading to progressive vision loss.  There are different causes of AIR, no set diagnostic criteria, and no standard treatment which makes it a challenging disease to manage.

A year ago, I suddenly experienced visual changes and lost part of my left peripheral vision.  Nothing seemed to cause it, nor did anything make it better. That evening, I was hospitalized overnight for an eye ultrasound, brain imaging, and labs and ultimately, these exams came back normal.

Over the next few months, my vision continued to worsen with progressive peripheral vision loss and increasing visual disturbances.  During this time, I had more testing than you can imagine with many potential diagnoses which typically eventually got ruled out.  My abnormalities included an enlarged blind spot on the left and a slightly reduced thickness of my left optic nerve.  My local retinologist and neuro-ophthalmologist weren’t able to do the additional testing to look at function of the eye in NV, so I was referred to Mayo Clinic. Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story”

The Courage to Share: 11 Blogs About Living with Sight Loss

Kai & I are very excited to share these eleven blogs that are written by individuals who are living with sight loss.

The bloggers have different diagnoses, and their philosophies, cultures, and religious backgrounds vary, but what they all have in common is the courage to share. They are organized by year of diagnosis. Continue reading “The Courage to Share: 11 Blogs About Living with Sight Loss”

A Journey Back To 2014: What We’ve Learned About Advocacy

While sheltering-in-place I’ve had the opportunity to read through some of my old journals written when Kai was first diagnosed and I’d love to share one with you.  I’m struck by major developments in my thinking and beliefs, so I will make some comments from my 2020 self, at the end of this post that I wrote in 2014.

Originally Written by Kim Owens & Published on Caring Bridge (7.14.14)

What a week we’ve had! Our trip from rural, coastal GA to DC was AMAZING! Thanks to our Congressman John Barrow and his wonderful staff the trip was filled with surprises beyond our wildest dreams! Continue reading “A Journey Back To 2014: What We’ve Learned About Advocacy”

A Step Forward & Other Hijinks!

Below is a link to an episode of one of my favorite podcasts called A Step Forward by Kassy Maloney. In this episode, Kassy hosts a panel of 4 adults who are blind or low-vision and encourages them to share openly about their Orientation and Mobility skills and history.  I could relate to so many of the stories shared and the episode sparked memories of one of Kai’s epic hijinks.

No Fear Kai

One lazy Saturday, there was a knock at my door. I opened the door to find an intimidating, bulky, 6’4″ tall police officer.  I could tell by the look on his face that something was wrong.  It turns out that he had just had an altercation with Kai and his friends. They were all 12-14 at the time, and up at the school playground. This is a regular occurrence in our small town — kids meet up at the school to play on the playground, ride scooters and skateboards. However, on this particular day, one of Kai’s friends pointed out that there was a built-in metal ladder to the roof which hung about 6 feet from the ground. The boys thought it would be a good idea to climb up and check out the roof (and post IG pics from the tip-top! what!?)  A passer-by called the police saying that there were 3 kids on the roof and one was wearing a neon yellow jersey.

Continue reading “A Step Forward & Other Hijinks!”

Featured

Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.

When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born.  Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. A school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”

Kai is 17 now, and he’s just completed his 4th delivery. This year, in addition to delivering comfort, he had a message to share: Comfort is important, but he now believes it’s even more important to push himself outside of his comfort zone. Continue reading “Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.”

See, Strechay & Momoa

Hi everyone!  This post was written by our boys — Kai who is 17 and legally blind and Cash who is 21 and typically sighted — about their recent travel to Canada to visit the set of the Apple TV+ original See! That’s right, they even got to meet Jason Momoa and watch a fight scene in a cave, as it was being filmed. (Season 1, Episode 6 – which aired this past weekend.) The post is wrapped up with comments from both dad and mom. Enjoy!

From Kai’s Perspective:

My brother Cash and I’s trip to Canada taught me so much and it was a great experience. We traveled to Vancouver to meet my mentor Joe Strechay, who is the blindness consultant on a new Apple+ TV show called See. Joe is an awesome guy who has helped me learn how to thrive with a visual impairment, so I was super excited about the trip. Continue reading “See, Strechay & Momoa”

On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?

by Kim Owens & Hilda Dunford (@OurBlindSide)

Many parents of children who are visually impaired or blind find it difficult to keep their children engaged in physical activities and sports. Hilda and I are often asked: How do you keep your child active and safe? Continue reading “On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?”

Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC

Hi friends, we are so excited to kick off our 4th year of Kai’s Comforts!  This year’s collection of new, soft, highly textured blankets and pillows will benefit the Governor Morehead School for the Blind in North Carolina.

Kai is a 17-year-old with a rare, progressive, eye disease called Retinitis Pigmentosa (RP). RP and other retinal diseases cause blindness. Night blindness is one of the first symptoms that many children experience and it can cause severe anxiety. Kai collects new, highly textured, soft, pillows and blankets to help comfort other kids facing blindness. Your donation will comfort a child experiencing vision loss.

Drop Bins bins are located in Statesboro & Brooklet at Pladd Dot Music, SE Tire & Service, and SEB high school’s front desk. Collection Dates Nov. 1-30, 2019.

Here are a few great articles about previous deliveries. Please get in on the fun! Continue reading “Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC”