A family unites to help a child SD with a rare eye disease

Manda took Kaydn to an optometrist at Mitchell that day. The next day, he was taken to the University of Minnesota Hospital in Minneapolis, where an ophthalmologist said his eye was already so sick that it would be best to have it removed. On December 28, after spending Christmas at the family's home in Woonsocket, the process was over.

About a month later, Kaydn was diagnosed with Coats disease, a rare eye disease affecting fewer than 200,000 people in the United States, or about 0.05% of the population, according to the Jack McGovern Coats' website. Disease Foundation.

"We are trying to make the most of it," said Manda Buck at the Daily Republic. "He will grow without seeing this eye, which is easier for him because it will be his normal state."

Coats' disease involves an abnormal development of the blood vessels behind the eye, causing the retinal capillaries to rupture and the serum part of the blood to leak to the back of the eye. This causes the retina to swell, which eventually detaches it. It is almost always found in one eye.

Although some forms of treatment may help people with this disease to retain some of their vision if the disease is detected at an early stage, there is no known cause, cure, or way to restore an already lost vision. .

Kaydn's case progressed so quickly that, although her mother took her to a doctor as soon as she suspected something was going wrong, the doctors told her that her retina had already come off the moment they traveled to Minneapolis.

In March, it will be equipped with an ocular prosthesis, which can be replaced if necessary. Manda Buck said that one of the disadvantages of her son's situation is that her eye and the information collected by doctors during her study will go to research on the disease.

Prior to Kaydn's diagnosis, his family, who had been diagnosed with cancer in recent years, feared that he had a rare eye tumor called retinoblastoma, which, like other eye diseases, had some symptoms of Coats disease. On January 24, when they learned that the problem was not a tumor, they were relieved, but said it was not easy to get there.

Kaydn's father, Bryan Buck, who is a truck driver, said that when Manda Buck called him for the first time to let him know something was wrong, he was within hours.

"I immediately collapsed," he said.

Manda Buck said that going through the period during which her son was diagnosed would not have been possible without the help of his family and friends.

His father, Bill Bell, said that when he learned that his grandson had health problems, he was angry at first, but he then knew that the only way to proceed was to allow members of the family to "help out" and help them financially. and taking care of Kaydn's three sisters, who are 9, 6 and 3 years old.

If the more concrete and non-cancer emotional diagnosis may have alleviated the family's emotional difficulties, their financial burden should not end sooner. Because of the rarity of the disease, Kaydn must be taken to Minnesota to see specialists who can fight against Coats' disease. Even though his visits will probably become less frequent as he grows up, he will have to be driven between Woonsocket and Minneapolis every few months to keep his prosthetic eye shape and make sure his other eye is not affected, resulting in $ 700 and $ 800 travel expenses per trip for the Bucks.

Manda Buck said she was frustrated by the lack of awareness and research on Coats disease. She hopes that more people will learn to recognize the warning signs of the disease, such as leucocoria, an effect similar to that of red eyes in photos but is rather white, yellow or orange. Other symptoms include loss of depth perception or central or peripheral vision.

More than two-thirds of people with Coats disease are men, and about two-thirds have symptoms before the age of 10.

"Unfortunately, we will not be able to find a cure (Kaydn). But my long-term goal would be to increase the awareness of families who may have to follow this process, "Buck said. "… I can not emphasize it too much. Take pictures of your family. Take pictures with the flash on. If you see something wrong, go to the doctor because it could happen. Your child might be without an eye for the rest of his life. "

Individuals wishing to help offset Bucks expenses may contribute to accounts under the names of Manda and Bryan Buck at the Dakotaland Federal Credit Union and an account for Kaydn Buck / Manda Bell / Buck at the Black Hills Federal Credit Union or by making a donation to GoFundMe entitled "Will fund me for baby Kaydn."