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Forgotten Childhood: Children With Dementia

We’re used to the idea that people with dementia are most likely in the age range of 30 over 65, but what happens when a person with dementia is 14 years old or younger? You get a case where a child is suffering from Childhood Dementia. This is a condition that results from progressive brain damage and is caused by over one hundred rare genetic disorders, according to the organization known as Childhood Dementia Initiative. It is also genetic, and children can be born with this condition. Like adults, children with dementia can suffer from symptoms such as memory loss, confusion, personality changes, and difficulties with concentrating, understanding, learning, and communicating. Most children unfortunately die before the age of eighteen, and half of the children die by the age of ten. These are incredibly unfortunate circumstances for children under eighteen to experience, here are some of those experiences.

Back in September 2018, a young girl named Angelina was found unconscious at school. When she woke up, her stepfather noticed that she had an unusual reaction on her face which her mom Niki recalled looked like a smile when she came out of seizures. Niki also noticed Angelina’s unusual behavior, such as her dropping things and falling over. Then one night Niki watched Angelina set the dinner table, and that’s when she knew something was seriously wrong. “She was smashing the glasses. All of them”. Niki recalled. “Just dropping them. I called our medical centre and they sent an ambulance. They were concerned it was a stroke”.

After being taken to the hospital, Angelina was originally diagnosed with a form of epilepsy. When her seizures were getting worse, Angelina started to also experience cognitive decline. Niki recalled her coming home upset one day because her friends lost their patience with her over a card game. Three months later, doctors confirmed that Angelina had Childhood Dementia and it was devastating news for her family. “It was a complete shock. Angelina was like most other teenagers. She had no signs or symptoms or any abnormalities”. Niki explained. “She was extremely social, self-motivated, goal-driven, academic and had big dreams for her future. She was in school musicals and attending acting classes and wanted to become a makeup artist and business owner”.

Angelina’s condition continued to worsen as she started having difficulty speaking, swallowing, and walking independently. She was also given a feeding tube so that she could be fed and given medications safely. Her behavior changed for the worse as she refused to eat, take medications, and get out of bed. In a short amount of time, Angelina was no longer the person she used to be. “Just two years ago, Angelina’s schoolwork showed full pages of neat writing, underlining, answering of questions and problem-solving”. Niki explained. “Now Angelina is lucky to write a few words or read simple sentences”.

The experience of childhood dementia is not only brutal, but even worse to cope with than having an adult with dementia. “How common is dementia in old people? It’s upsetting to see a parent like that”. Niki explained. “To see that happening for a child who has lost all their future dreams is even more devastating”.

Another case was a two-year-old girl named Mirryn Cunningham. Mirryn was diagnosed with a chromosome disorder called Batten disease, which caused her to not be able to eat by herself, walk, or visually see.

It happens in 5-6 births every year in the U.K. and there’s no cure for it. When Mirryn was born at thirty-one weeks and weighed just over three pounds, she was originally diagnosed with delayed myelination, due to issues with the nervous system. Then the MRI results revealed the severity of her condition that’s caused her to lose her motor skills. “We've been given the worst diagnosis you can have”. Vicky Cunningham stated in a BBC source. Vicky also explained in an interview about the signs she noticed about her daughter before receiving her diagnosis.

“Mirryn never tried to hold her bottle and could only hold gaze for maybe a couple of minutes then move away”. Vicky explained, “As she got older and should have been doing more things, she wasn't rolling over or trying to touch a ball or any toy in front of her”. When her daughter’s condition continued to worsen, people told Vicky that it could be a developmental delay, yet her instincts were telling her otherwise. She explained how her daughter started slurring with her words, and even afterwards started losing more functions in her body, which even included the small functions she used to have such as swallowing.

In coping with this disease, Vicky was fortunate to receive tremendous support from her community and hopes to raise more awareness about this condition. I had no idea that such a thing like this could exist in children, but it’s heartbreaking to know that it does. I thought that my dad’s case with vascular dementia was bad enough, but this is far worse. At least my dad got to have a normal childhood where he went to school and played with his friends. He got to have a normal teenage life, wherein he got to graduate school and get a job.

He got to have normal adult years, wherein he got married and started a family. My dad got to have a full normal life before he became sick like this, but kids are sadly losing their childhoods and aren’t guaranteed to have teenage and adult years. There must be more awareness of this condition, especially if it helps parents detect it early before the child is born then early intervention can take place to slow down the process. Children are our future, they are the one who will help change the world for the better and if we want it to stay that way, then we need to do more to fight for their future by fighting this disease.

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