A mum from Billericay is campaigning for compulsory eye checks on babies and toddlers after her daughter was diagnosed with a rare eye disease.
Stacey Brown’s daughter Grace has Coats disease. Coats is very rare disease for which there is no cure.
Stacey said: “I knew something was not right when her daughter was born.
“I voiced concerns with different health care providers on numerous occasions. I 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”. However a few weeks later, Stacey noticed something new in Grace’s right eye.
When Stacey laid Grace down to change her diaper, Stacey could see a yellow mass in
Grace’s eye, they immediately rushed Grace to the nearest emergency room.
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.
Stacey continued: “We faced an unknown challenge as there is little information available on the disease, treatments and prognosis. Each case is unique.
“There was no one to talk to and no support.
“I have set up a facebook page to raise as much awareness as I can, providing information and connecting families that are going through this disease.
“Im also campaigning to make babies and toddler eye checks compulsory.
“At the moment the last eye check a baby gets is at 12 weeks old.
“This is not good enough there must be more to prevent other families going through what we went through to get a diagnosis.”
Since her Coats diagnosis, Grace has received one operation with Dr. S. Chien Wong at Moorfield 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.
Stacey concluded: “I want to take my campaign to Parliament and I also hope to set up a charity one day.
“Grace is a happy, energetic girl who remains unfazed by all the doctors’ visits. She is our source of strength, and we call her our ‘Amazing Grace’.”