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I’m losing my little girl with dementia

I’m losing my little girl with dementia

 


An enthusiastic mom talked about how she lost her little girl to her childhood dementia.

Florence Swahfield Catastrophic illness Only a few months after walking down the aisle at her parents’ wedding.

A 3-year-old child is currently living with CLN2 Batten disease. This is a very rare illness.

It has no cure and tragically gives life expectancy of 6 to 12 years.

She has lost the ability to speak, walk, eat and drink independently – she has lost almost every word she has already learned.

But nevertheless, her mom says Florence is cheeky and funny with “the most infectious belly laughter”.

Phoebe, a civil servant at the Coventry Department of Transportation in the West Midlands, said: “Our world is divided into two chapters, pre-diagnosis and post-diagnosis.

“Since the wedding, Flory’s maneuverability has dropped significantly and she can no longer run that way.

“She isn’t confident to walk on the grass because her legs give way up to 100 times a day.

“How quickly it This illness You can proceed.

“We really want to raise awareness about the disease in Florence.

“Most people have never heard of Batten disease. Children can develop dementia-like conditions It is mainly related to the elderly.

“When I returned to the genetic test, no doctor even knew it existed.

Florence Swahfield was diagnosed with a catastrophic illness just months after walking down the aisle at her parents' wedding.
Florence Swahfield was diagnosed with a catastrophic illness just months after walking down the aisle at her parents’ wedding.
Tristan Potter / SWNS

“Even after her diagnosis, the pediatrician and GP had to google it.

“The more doctors know it, the sooner the children will be diagnosed and they will get a better quality of life.

“We are determined to live the best possible life in Florence.”

After returning to England from her wedding in September 2021, her parents found that Florence was having a hard time walking and eating.

Doctors initially refused to eat and drink Florence, dismissing Phoebe’s concern that something was wrong when he began to sleep for up to 22 hours a day.

Mother’s instinct

Phoebe said: “When Florence came home, he realized something was wrong and never wanted to eat it.

“She also slept all night, unlike other babies. It really started to worry me.”

Phoebe further states:

“I knew something was wrong, but no one was willing to listen.

“I was so desperate that I even thought about taking Florence to the hospital and leaving her a note asking someone for help.”

But finally in November, Florence was finally diagnosed sickOnly affects up to 50 people in the UK.

Phoebe and Joe are keen to have gene therapy available to improve their daughter’s prognosis, but treatment is in the United States because clinical trials have not yet been approved by the Food and Drug Administration (FDA). It is only in the research stage of.

Hoping that treatment will eventually be available, Phoebe and Joe are trying to raise money for it.

Young people began to struggle to eat and walk.
Young people began to struggle to eat and walk.
Pheobe Swaffield / SWNS

Family pain

Florence had difficulty giving birth, and her mother was worried that something might be wrong in the next few weeks.

She made a hacking noise, slept well, and refused to eat often.

When Phoebe managed to advise her to feed, she fired vomit within an hour of feeding.

Phoebe was always reassured that her baby was fine and hospital staff advised her to use more power to awaken Florence and encourage her to eat, but she felt there was more. rice field.

Phoebe said: I tried to feed her, but she vomited.

“I don’t think the baby will fire like her.

“It’s a continuous cycle of stress, and I felt like I was hitting my head against the wall.”

When I started the nursery, Florence was significantly smaller than my classmates and had less cognitive development. When she arrived at the nursery, her parents decided to return to the UK for better support.

After she was diagnosed, both Florentine parents were identified as carriers of the CLN2 Batten disease gene inherited in Florence.

However, tests also revealed that she had Ververi-Brady Syndrome. This is a condition characterized by mild development and language delay.

Florence is the only person in the world where these two mutations occur at the same time.

The diagnosis followed a series of extreme seizures that began in August 2021, with Florence moving out of control and zoned out for about 30 seconds.

The seizures were expected to worsen over the course of the illness, according to Feobe.

Doctors initially refused to eat and drink Florence, dismissing Phoebe's concern that something was wrong when he began to sleep for up to 22 hours a day.
Doctors initially refused to eat and drink Florence, dismissing Phoebe’s concern that something was wrong when he began to sleep for up to 22 hours a day.
Tristan Potter / SWNS

She said. “Joe and I fell on the couch. I was hysterical and didn’t know what to say.

“It was something parents never needed to hear, not what we expected.

“I didn’t know that life was so cruel, and I didn’t think it could happen to our family.”

As part of her treatment, Florence receives an enzyme injection every two weeks at the Great Ormond Street Hospital in London. This is what she has to receive for her lifetime.

Since Florence is not expected to live into teens and gene therapy is the only treatment, the family has set up a GoFundMe page to help study this condition.

Pheobe said: “We are saving all the penny for potential treatments and techniques. All that remains will be donated to the Batten Disease Family Association and other charities that support Batten disease families.”

The family is also preparing to make changes to their home as Florence will continue to lose athletic performance for the next few years.

Pheobe said:

“There are always pioneering technologies in place and we want to be able to provide Florence with the highest quality of life.”

This story originally appeared To the sun I duplicated it here with permission.

Sources

1/ https://Google.com/

2/ https://nypost.com/2022/04/18/im-losing-my-little-girl-to-dementia/

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