Help the Fight to Cure Coats’ Disease

You never know what challenges life may send your way and how you will respond. River Hill residents Barbi and Kevin Smole, and their three children, have learned firsthand how to handle adversity and how to share their experiences and help others.

On December 27, 2013 the Smole family’s lives changed when Sean, a Kindergartener at Pointers Run Elementary School, was in his yearly eye exam. A  normal, routine, uneventful visit is what they were expecting. They had no reason to think it wouldn’t be routine. How wrong they were. In the first 3 minutes of Sean’s eye exam they realized there was a major problem. He couldn’t see anything out of his right eye. What? How was this possible? Sean had just had an eye exam 10 months prior and all was fine, but now he was blind in his right eye. In those 10 months he had never mentioned to Barbi and Kevin that he was having trouble seeing.

Sean was diagnosed with Coats’ Disease and they found themselves in a new world of medical terms and multiple surgeries. The Coats’ Disease Foundation defines the disease as “a very rare condition where there is abnormal development in the blood vessels behind the retina. The blood rich retinal capillaries break open, leaking the serum portion of the blood into the back of the eye. The leakage causes the retina to swell, and can cause partial or complete  detachment of the retina. Coats’ disease is seen predominantly in males, about 69 percent of the cases. It progresses gradually and affects central vision. It is almost always unilateral (affects only one eye). If caught early, some level of vision can typically be restored. If not caught until its late stages, complete loss
of vision can occur. In its final stages, enucleation (removal of the affected eye) is a potential outcome.”

The Smole’s New Year’s break was spent on phone calls and emails to the doctors and specialists at The Wilmer Eye Institute. On January 6 they met with Dr. James Handa and on the 7th Sean went through his first of, so far, seven surgeries. His team of surgeons and researchers at The Wilmer Eye Institute have come together to recover some vision and save his eye.

Their family has now been affected by Coats’ twice. A cousin in Florida also has it . . . and it isn’t genetic. Sean’s chances of having Coats’: 1 in a million.

Through this journey the Smoles realized that no one is raising funds specifically for Coats’ Disease research. The researchers rely on funds that are from those made as general donations to the Institute. So, the family decided they had to give back to make the process easier and more successful for the next child who is faced with this diagnosis. That is how their Curing Coats’ Fundraiser was started.

Two events are planned for Saturday, October 11:

2 p.m. Pilates Mat Class (Open to the Public) at Ballet Royale (9147 Red Branch Road #D, Columbia)
Suggested $20 Donation
Raffles Sponsored by Athleta and Pointers Pilates
Bring a Mat or Towel

7 p.m. Drinks, Dessert & Silent Auction
By Invitation Only, Smole Residence

Please help spread the word about the Pilates class. If you have a business that would like to be included in the Silent Auction, please contact Barbi at blsmole@yahoo.com or 410-290-1507. If you are interested in attending the evening event, please email blsmole@yahoo.com for an invitation. To make a direct donation, visit https://secure.jhu.edu/form/wilmer and designate “Coats’ Disease Research Fund.” If just one parent takes their child to the eye doctor, then the Smole family will consider their efforts a success. The majority of parents never take their children to an eye doctor. Instead they are typically seen by a pediatrician. Therefore, many diseases and issues that can only be found when the eyes are dilated go undiagnosed. Please take your children to
the eye doctor to have them checked . . . you may just save their vision.

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