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Three siblings lose eyesight and start having seizures; they die within three days of each other
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This heartbreaking story will make you hold your loved ones a little tighter. - photo by Lindsey Miller
Les and Celeste Chappell were parents of a happy, large family of nine children when their three youngest children started having trouble with their eyesight. Soon after, the children started having seizures, and the parents knew that there was something horribly wrong.

Les and Celeste took their children Christopher, Elizabeth and James to specialists, where they first heard about Batten disease. According to the Beyond Batten Disease Foundation, symptoms include blindness or vision problems in children between five and ten years old, and seizures typically starting around eight years old.

Over a period of time, an individual with Batten disease experiences repetitive speech, loss of speech, dementia, loss of motor skills and eventually, premature death.

A scary realization

One night when Les and Celeste were on a date, they decided to discuss the fact that this disease might be a reality for their children. Elizabeth was later tested for the genetic disease, and when her results were positive, the doctors diagnosed Christopher and James as well.

After a long struggle with the rare disease, Les and Celeste had a tough decision to make. Their children had lost the ability to swallow, and were being fed through a feeding tube. This past July, the heartbroken parents made the decision to take their children off of the feeding tubes, and let them pass away in peace and comfort.

Three deaths in three days

Elizabeth was the first to pass away on July 14, 2017 at 19 years old. Her brother James followed the next day at 15 years old, and then Christopher was the last to go at age 20 on July 16, 2017.

They held onto their faith

The parents were absolutely heartbroken to lose their children, and they will have to go through it again, as their youngest child Samuel was also diagnosed with the disease. However, throughout the whole ordeal, they held strong to their faith.

Because of their Mormon faith, the family was able to find comfort in the belief that theyll see their children again someday, and theyll all be together forever.

The triple funeral

The siblings were all buried at the same time, and the caskets were lined up with flowers on top of them that represented each childs personality. Roses for Elizabeth the princess, Christopher had sunflowers because he was always smiling and James had blue wildflowers because he was all boy, according to the Washington post.

The parents purchased three double-depth plots for the burial. Christopher and Elizabeth shared a plot while James was buried in a separate one, where Samuel will join him later. Then when Les and Celeste pass, theyll take the third plot to lay by their children.

While this genetic disease is extremely rare, it is common for it to affect more than one child in the same family, which was the case for Elizabeth, Christopher and James.

Youre not alone

If youve had a child with a terminal illness, you can understand the heartbreak and tragedy it brings. Its an absolutely horrible thing, but youre not alone.

Another girl from Utah passed away in 2014 from Batten disease, and one of her last wishes was to raise awareness of the disease and show what daily life is like when battling it. Her father created a Facebook page called Kennedys HUGS where he posted updates and what life was like with Kennedy.

Although Kennedy passed away, her legacy lives on by raising awareness of the disease and sharing her incredible story. Her dad still posts memories and updates on the Facebook page, and her story was made into a movie called "Love, Kennedy."

Losing a child is something that no parent should have to go through, but the legacy they leave behind is remarkable. These families are in our thoughts and prayers, and we hope they can find peace and comfort during this difficult time. For more information on Batten disease, visit the Beyond Batten Disease Foundation.
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From the book 'Outliers' comes proof that good health is more than just genetics
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Friends Jim Young, left, Mike Natale, Jeff Natale and Ryan Kiernan were on Greenwich High School football team together and Jim and Mike were captains. Jim, who was the youngest in Sherry Young's family, was welcome in the homes of the other three boys who still had siblings around and grandparents near. - photo by Sherry Young
As I look back on my life and the lives of others, both personally and in the reading I have done, I am convinced of the necessity of positive human contact in our lives. We are doubly blessed when we are able to make good friends or are a part of a family where we are accepted and loved.

Malcolm Gladwell in his book Outliers tells of a time in the 1950s when Dr. Stewart Wolf met a physician who practiced in the area of Roseto, Pennsylvania. Roseto was settled by a group of Italian families from Roseto, Italy, who re-created their life again in America.

This was in the 1950s before drugs and measures to prevent heart disease became important. In their conversation the physician said, You know, Ive been practicing for 17 years. I get patients from all over, and I rarely find anyone from Roseto under the age of 65 with heart disease.

Wolf was surprised by these words as, It was impossible to be a doctor, common sense said, and not see heart disease.

Wolf enlisted the aid of a sociologist and friend John Bruhn to help him. They found, There was no suicide, no alcoholism, no drug addiction, and very little crime. They didnt have anyone on welfare. Then we looked at peptic ulcers. They didnt have any of those either. These people were dying of old age. Thats it.

They checked into diet, genetics and possibilities of something in the foothills of eastern Pennsylvania but nothing made sense.

What they found was that Rosetans visited one another, stopping to chat in Italian on the street, say, or cooking for one another in their backyards. (Researchers) learned about the extended family clans that underlay the towns social structure. They saw how many homes had three generations living under one roof and how much respect grandparents commanded. They went to Mass at Our Lady of Mount Carmel and saw the unifying and calming effect of the church. They counted 22 separate civic organizations in a town of just under 2,000 people. They picked up on the particular egalitarian ethos of the community, which discouraged the wealthy from flaunting their success and helped the unsuccessful obscure their failures.

What they found eventually convinced the medical establishment to look beyond the individual and understand the culture people are part of their friends, families and town they came from. They determined that the people we surround ourselves with and the values of the world we inhabit have a profound effect on who we are.

Likely, this study could have been done with other ethnicities. However, my family's experiences with the Italian families in Connecticut ring true to the study. Our hungry and growing sons, especially our youngest son, Jim, who was left home alone with two beady-eyed parents, all had some memorable experiences being fed and loved in the Cos Cob multigenerational families. Proof of the African proverb, It takes a village to raise a child.

We live in an age when the contact we have with people often is on the internet, and many of us live among strangers. Unless we make the effort to reach out, we will become isolated, especially as we age. The Rosetan study is proof that reaching out and communicating may be good for our health.
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