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Three Siblings With Rare Condition Die Over Three-Day Period

Three siblings who all suffered from the same rare neurological condition passed away over a period of three days. The parents of ten had to decide whether to keep their three children alive on life support or to let them go. They opted to take the kids off life support and allow nature to take its course. One more child in the family is still living with the disease.

Les and Celeste Chappell of Utah had to make a decision that most parents could not fathom: taking their three children off life support. The three children all suffered from Batten disease, a rare degenerative disorder that has no cure.

Batten disease is a lysosomal storage disorder (LSD), a group of diseases in which genetic mutations disrupt cells from disposing of waste. Because of this, the cells build up with proteins and fats. As the disease progresses, patients suffer from seizures, loss of vision, personality changes, loss of motor skills and dementia. Eventually, the children will lose their ability to walk, talk, swallow, and communicate altogether.

The Chappell family had to watch three of their children go through that pattern: Elizabeth, James and Christopher. When the three kids first started experiencing symptoms, the family went to specialists in order to figure out what was wrong. When they finally learned their children's fate in 2005, they had to have a serious conversation about what they would do.

Les and Celeste decided that, rather than keep their children alive with machines, they would allow them to pass away peacefully. The couple had continued treating Christopher and Elizabeth, their older children, but it did no good to prevent the inevitable. They opted to not even try to get treatment for James.

In July, the difficult time had finally come. Three hospital beds were lined up in the Chappell's living room and the three children were placed side by side. The kids were taken off life support and given morphine and lorazepam so that they could be comfortable. A hospice team warned the family that it could be weeks before the children passed away, but it happened more quickly than they imagined.

Elizabeth, age 19, passed away on the same day life support was shut down. Her younger brother, 15-year-old James, went the next day. Finally, the day after that, Christopher, age 20, died.

As each child died, the family gathered around the beds and shared memories. They told stories of the good times and mourned together. They talked about how they always imagined that Christopher would be a doctor, Elizabeth would be a gymnast and James probably a baseball player. They then read from the Book of Mormon and talked about the paradise where the religious family believed the children had gone after death.

A week after the children passed away, the family held a funeral service and buried them together.

Perhaps the most tragic part is that one of the younger children, ten-year-old Samuel, also has the same genetic disorder that killed his older brothers and sister.

Source: Daily Mail
Photo: Chappell Family

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