“Hi, my name is Janine. It was a year ago, February 29th, 2024, when I read Viktoriia’s story on The Ehlers-Danlos Society’s Facebook page. Viktoriia shared that her five year old son, Nikitka was diagnosed with a type of Ehlers-Danlos syndrome, Brittle Cornea Syndrome (BCS). BCS is a genetic connective tissue disorder that causes the cornea to be thin, fragile, and prone to rupture. She was pleading for help that someone would see her story and help her little boy. She stated she “Did not want to miss even the smallest opportunity to try and save his sight.”
I had never heard of Brittle Cornea Syndrome, but I sure knew hypermobile EDS, very well, as did my daughter, Karissa.
All day and into the night I could not get Nikitka off of my mind; when in the middle of the night, I physically felt a “nudge”. I believe that “nudge” was from both God and my precious daughter. Karissa passed away on December 23, 2020, and was a corneal organ donor through the Lions World Vision Institute (LWVI) in nearby Tampa, Florida. I got to know James at the Institute through her donation. I thought to myself, this boy needs a new cornea and I know someone who has corneas.
First thing the next morning I called James at LWVI and shared the Facebook post. Through diligent research, James found Viktoriia. She lived in war torn Ukraine. What to do now?
I contacted The Ehlers-Danlos Society Helpline and was connected with Nina. After many attempts, we finally connected with Viktoriia and started Zoom weekly calls with her in Ukraine. A beautiful friendship was the result. She knew we wanted to help Nikitka, but none of us had any idea how to help him. Through the extraordinary help of Nina at The Ehlers-Danlos Society, she provided many research articles. We tried to contact physicians in India, Germany, Canada and England, who had authored the articles she shared with us about BCS, but no answer came.
Time was running short as Nikitka’s left eye had already ruptured and the right eye was at high risk for a rupture. Viktoriia had been told, certain blindness would befall her son, within six months.
We finally got a lead to a pediatric corneal transplant surgeon, Dr. Nischal in Pittsburg, PA, USA. James called him, sent him Nikitka’s records, and explained the situation. After reviewing the medical records, he advised that Nikitka needed a cornea over cornea transplant. He agreed to do the surgery, but felt his mentor, Dr. Hamada, at the Eye Clinic London in the UK would be a better choice, due to logistics.
James contacted Mr. Hamada and after a video consultation with him, Viktoriia, her husband, Sergey, and Nikitka, he agreed to take Nikitka as his patient. After so many stops and starts from March through September, of endlessly searching, we finally had our answer.
Surgery was awaiting Nikitka, but passports and the proper six month medical Visa to Great Britain were standing in the way. I invited my dear friend, international pilot, Andrew, who lives in Missouri, to join our team. He knew all about passports, visas, could help with flights, etc. to get the family out of Ukraine to London.
Sergey literally risked his life with bombs and artillery raining down all around him, while he waited in Kiev, for a week awaiting the receipt the necessary Medical Visas for the family. Surgery had been set for November 23rd and had to be cancelled, as was a second surgery date, December 21st, due to the delay in the visas. Finally the Medical Visas were issued.
The family left, under cover of darkness, to get out of Ukraine and into Romania and boarded the plane to London. With the family’s limited budget and slim funds, Andrew arranged for the flights, payment of the surgery to the hospital, and also booked accomodation in London, for the family.
We worked with Ali, Lorand and Mr. Hamada at the Eye Clinic London and the Great Ormond Children’s Hospital. James had arranged for the cornea to be sent for the surgery. LWVI and Mr. Hamada waived all fees connected to the gratis cornea and the surgery. Surgery was set for January 25, 2025.
Surgery took place, cornea over cornea transplant surgery and it was a complete success! Sight for life, in the nick of time, as the eye was very close to rupturing. Nikitka is healing beautifully and I am thrilled to shared the second eye surgery will be performed on March 8th, 2025.
May grace be given to the Donor family of the child whose cornea gave sight to Nikitka in January, and to the family of the donor for the upcoming surgery in March. I have now seen and experienced the crippling grief and devastation of the loss of a child whose selflessly donates their corneas at their passing. I have also witnessed the absolute elation on the other side, of the family whose child receives sight, from that donated cornea. It has come full circle for me, personally.
Nikitka’s loss of hearing has also been addressed and the new hearing aids are making all the difference. New glasses will be coming next.
It just shows that miracles can and do happen when folks gather together to help one another, without ever being deterred or giving up. We kept our faith and stayed on the path to seek sight for Nikitka and the answers were finally revealed.
Our little team of myself, Nina, James, LWVI, Andrew, Viktoriia, Sergey, Ali, Lorand, Mr. Hamada, the Eye Clinic London and Dr. Nischal are all working together to start a program to help other BCS children gain lifelong sight and will be announcing our program very soon. Nikitka was only the first child to be helped. We look forward, with our team, to helping others with BCS, in their search to attain lifelong sight, through cornea over cornea surgery.
Never lose hope. You never know who just might be reading a post and might feel the “nudge” to get involved. Ordinary folks doing extraordinary things to help others in need. Blessings abound.”
