Jeremiah’s Story

Posted on 2017-03-07

In December 2016, the Fortner family moved to Fort Meade, Md., where 5-year-old Jeremiah started in a new kindergarten class. Just two weeks later, he came home with a note that would change the direction of his life. Jeremiah had failed the school eye exam.

Jeremiah’s parents were surprised at this news, as Jeremiah had just passed a paddle vision test at his pediatrician’s office six months before. Unalarmed, they set up a routine eye exam with an optometrist in their area. They were not prepared for the news they were given at this exam. Jeremiah had 20/200 vision in his left eye. More than that, the photograph of his retina taken at the exam showed a large yellow spot. They were told that this spot signaled that he either had Coats Disease or Retinoblastoma. He needed to be seen by an ophthalmologist urgently to discover the correct cause of this glow.

Jeremiah’s parents had never heard of Coats or Retinoblastoma. His mother, Angela, started to investigate. It was during this research that she learned of “The Glow” and how it could be an indicator of these and several other conditions. She looked back and sure enough, the Glow was present in Jeremiah’s photos. She had always assumed this was just something strange with the camera. She did not know this Glow was an indication of her son’s vision issue. The Fortners were determined to have Jeremiah diagnosed as quickly as possible.

Unfortunately, this was not as easy as they hoped. Their insurance required proper referrals to be seen by the specialist. Several of the offices they contacted did not know of the Glow or take the optometrist’s report seriously. The Fortners kept insisting that they be seen. Finally, Dr. Mary Beth Arownow and Dr. Adam Wenick saw the family at Wilmer Johns Hopkins. Within 15 minutes of the first exam, Jeremiah’s parents were told their son did not have Retinoblastoma. They were relieved but also concerned as they were told they were most likely facing a Coats diagnosis. It was not until they performed an exam under anesthesia that doctors confirmed this diagnosis.

On January 30, 2017, Jeremiah had his first laser treatment. All went very well. He and his family are hopeful that this will be the only laser treatment he needs. The ophthalmologist will monitor his progress periodically to make sure the Coats remained stable. Jeremiah’s vision remains 20/200, but he continues to be a very active little guy. He loves to swim, play football, practice jujitsu and play with his siblings.  Angela feels very grateful that Jeremiah’s new school discovered his condition. She is determined to spread awareness in the hopes of helping other families discover their own “Glow”.

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