태그 아카이브: BarefootResearchDaughters

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Meet Father Trekking Hundreds of Miles Barefoot to Help Fund Research for Daughter's Treatment

This father is going the extra mile — and then some — to support his 9-year-old daughter Hasti, who has a rare genetic disorder called Cornelia de Lange Syndrome (CdLS).

Chris Brannigan, a 41-year-old retired British Army Major, is currently walking barefoot from Maine to North Carolina in an effort to raise money to create a gene therapy for CdLS.

We knew as soon as Hasti was born that she had some challenges and things weren’t quite right. She had a seizure within 24 hours of being born. She wouldn’t eat willingly for the first year of her life. It took her five years before she even said a word,” he tells 사람들 (The TV Show!).

After finally getting a diagnosis six years later, Chris and his wife Hengameh were told that there were no treatment options — an answer theynever accepted.

“정말이야, really terrifying because for us, we have such a bright and bubbly little girl in Hasti, and she loves life. But from about age 12, all the studies show that children with CdLS have declining executive function, they have an increase in aggressive behaviors, in ADHD, in autistic spectrum disorder type behaviors, and in some cases they become mute,” 그는 설명한다. “We just don’t want that for Hasti.

Hope for Hasti

Hope for Hasti
Chris Brannigan and daughter Hasti
| 신용 거래: Courtesy Hope for Hasti

지난 1월, Chris and his wife founded Hope for Hastiwith the aim of creating a therapy that can treat CdLS.

Our hope is that while this will never cure the condition, that it can elongate our life, that it can improve her health and her health span, her cognitive ability, and hopefully someday enable her to have an independent life,” 그는 덧붙인다.

하지만 coming up with funding has been tough, especially during the COVID-19 pandemic.

We need three and a half million dollars to make this a reality for kids,” 그는 말한다. “So we knew we had to do something big, something really to grab people’s attention.

크리스 who did a previous walk in the United Kingdom last year says so far, the barefoot trek across the United States has beenagonizing.

Lots of people walk and cycle, but we thought we need to do something really that will make people look twice, and we’ll hold their attention. That’s why we decided to do it barefoot. Walking’s easy, barefoot it’s so very, 열심히. Just like Hasti’s journey,” 그는 말한다.

사실로, Chris says thatevery time I feel like I’m tired and I want to stop, and it’s painful, I just remember that being able to choose is a luxury that she doesn’t have.

Hope for Hasti

Hope for Hasti
Chris Brannigan
| 신용 거래: Courtesy Hope for Hasti

스토리를 놓치지 마세요. 사람들의 무료 일간 뉴스레터 PEOPLE이 제공하는 최고의 최신 정보를 유지하기 위해, 흥미진진한 유명인 뉴스부터 흥미진진한 스토리까지.

Following his 35-day trek last year, Chris was recognized with a Pride of Britain Award and even earned a shout out from 테일러 스위프트.

I was very surprised,” 그는 말한다, recalling that the singersaid she was really proud of Hasti and everything she’d gone through to try and create this treatment.

That really lit her up because she loves Taylor’s music,” 그는 덧붙인다. “Hasti was really over the moon, 알 잖아? We had to watch it about a million times.

Anyone interested in donating to the Hope For Hasti Just Giving page can do so 여기.