Patient stories

Jeffery’s Journey: Sophie, Jack, Alfie, Stanley

“[CF] will make you stronger as a family or it will send you in the opposite direction: you have to deal with it as a unit”

If you saw them on the street, you would probably think the Jefferys are your typical family. You would probably see the mother Sophie and the father Jack, chasing their one-year-old Stanley and six-year-old Alfie, around their suburban neighborhood block. It would be nearly impossible to imagine the daily struggles their household faces at first glance.

It is the unique nature of their struggles that could be easily overlooked. Barely a toddler, their child Stanley has cystic fibrosis. He requires hours of medication daily, in addition to all the supervision of any typical toddler. The Jeffery’s other child, Alfie, the mischievous older brother aka Stanley’s partner in cookie-stealing crime, does not have cystic fibrosis. Yet, he still requires the care of any six-year-old child. Sophie and Jack realize the immense responsibilities they shoulder as parents to provide both their children the love and support they deserve. They tell us, “Alfie, our eldest [son], still needs his own time and attention so we work together to make sure this happens. This is just another example of how CF affects everyone in the family”.

From January 2017: Alfie (six years old) with Stanley (then 5 months, now a year old)

When Stanley was diagnosed with cystic fibrosis as a newborn baby, Sophie and Jack immediately took action to fight CF as a family. They created the blog ‘Stanley’s Journey’ to spread awareness of CF and to share their experiences as a family with Stanley when he grows older. For his part, Jack decided to embark upon a 300-mile bike ride from London to Paris to raise awareness of cystic fibrosis. On Stanley’s Journey, Jack writes, “The bike ride from London to Paris was my reaction [to Stanley’s diagnosis]. A way to show my boys we’ll carry on fighting, that maybe CF dealt us a blow but we’ll throw one straight back.” Throughout the whole bike ride, Jack and his brothers who decided to contribute to the Jeffery effort against CF, chanted “Stan, Stan, Stan the man” to keep themselves going. While Jack was pedaling hundreds of miles, Sophie was holding the fort down at home by updating the blog with the bike ride and with the daily joys Stanley and Alfie contribute to the Jeffery household. From Stanley’s Journey and the bike ride, the couple quickly gained unexpected attention from local news stations. The press coverage only added fuel to the fire to keep fighting. Jack proposed to Sophie at the end of his 300-mile trek in Paris, smack dot in front of the Eiffel Tower, solidifying their status as a team.

Left: Jack Jeffery with his brothers post-300-mile bike ride; Right: Sophie wedding ring after Jack proposed in front of the Eiffel tower in France

The Jefferys face many struggles as a family, but they maintain a determinedly positive attitude to make their daily lives as meaningful and enjoyable as possible. Every day, Sophie and Jack work as a well-oiled machine to administer Stanley’s medication. One of them prepares the medications, while the other performs Stanley’s physiotherapy. One keeps a squirming Stanley still and secures the nasogastric tube, while the other inserts the tube through Stanley’s nose, past his throat, and down into his stomach. One brings Stanley for his regular hospital visits, while the other stays at home to watch Alfie after school. One has a moment of realization of how terrifying CF can be, while the other one wipes the tears away and provides consolation. The Jeffery’s carry on with the determination of a professional sports team everyday towards the hope for a brighter future for the cystic fibrosis community, and share that hope with the world through their blog: Stanley’s Journey.

Sophie, Jack and Stanley Jeffery with the Leicester Hospital staff

You can follow the Jeffery’s story here:
Facebook: @getitoffyourcheststanleysjourney
Instagram: @getitoffyourchestcf
Twitter: @StanleysJourney

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