Grace’s Story

Posted on 2016-09-26

Grace’s mother, Stacey, knew something was not right when her daughter was born.  Stacey voiced these concerns with different health care providers on numerous occasions.  Time and time again, Stacey was told that everything was fine with Grace and to give her concerns a few more months.  By the time Grace was 10 months old, Stacey could not ignore her mother’s intuition any longer and took Grace to the optician for a thorough exam.  The optician diagnosed Grace with a “left eye squint” and instructed Stacey to follow up with an ophthalmologist.  Stacey was relieved that a doctor finally recognized her concern, and waited for Grace’s follow up appointment. 

However, two weeks before her ophthalmology appointment, Stacey noticed something new in Grace’s right eye.  When Stacey laid Grace down to change her diaper, the light hit just right, and Stacey could see a yellow mass in Grace’s eye.  She wanted to believe this mass was just a result of her “squint,” but Stacey’s intuition told her that this was something more.  Stacey researched what she saw, and immediately discovered it could be Retinoblastoma.  Stacey spoke with her husband about her findings, and he laid Grace down to take a look.  After her husband saw the mass in Grace’s eye, they immediately rushed Grace to the nearest emergency room. 

Stacey and her husband saw many different doctors, opticians and ophthalmologists that day. They confirmed seeing a mass in Grace’s eye.  Believing that Grace had Retinoblastoma, doctors sent the family to Royal London Hospital.  After examining Grace’s eye under anesthesia, doctors were able to confirm that Grace did not have Retinoblastoma, but rather a rare eye disease called Coats.

Although they were relieved that Grace did not have cancer, they knew they still faced an unknown challenge ahead. Coats’ is very rare disease for which there is no cure.  There is little information available on the disease, treatments and prognosis.  Each case is unique, and the family did not know what they were facing.

Since her Coats diagnosis, Grace has received one operation with Dr. S. Chien Wong at Moorsfield Eye Hospital in London.  Dr. Wong was able to partially reattach Grace’s retina and perform a laser treatment that temporarily stopped fluid from leaking behind her eye.  Grace’s family takes treatments one day at a time, but they are hopeful that things continue to go well.  Grace is a happy, energetic girl who remains unfazed by all the doctors’ visits. Grace’s parents often feel that she is their source of strength, and now call her their “Amazing Grace!”