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what it feels like

living with cystic fibrosis at 5-years-old

liam wilson, with the help of his mom, created a picture book to teach kids about cystic fibrosis.

by emma jones

oct 8 2020

7 minute read

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five year old liam already knows to ask for his oxygen mask if he has trouble breathing. deana wilson

liam wilson was born on valentine’s day. three weeks later, he was in hospital and his parents were reeling from a diagnosis of cystic fibrosis .

cystic fibrosis is a genetic disorder in which cells produce a sticky and thicker variation of the body’s mucus, sweat and digestive fluids. because of their altered state, these secretions can then build up and block various passageways in the body, damaging important organs and leading to an increase in infections.

the lungs and digestive system are the most commonly affected by cystic fibrosis. without treatment, people may experience persistent coughing, frequent lung infections, intestinal obstruction, and poor weight gain and growth. currently, patients can live into their fifties with treatment, however, quality of life is greatly affected.

healthing.ca spoke to liam and his mom, deana, about what life looks like with cystic fibrosis.

how was liam diagnosed?

liam was born on valentine’s day and three weeks after my family doctor noticed that he was breathing really quickly, so she sent us to oakville-trafalgar [memorial hospital].there were other signs as well. he wasn’t gaining weight. in fact, he was losing more weight than he was gaining.

i can still see picture him at the hospital. there was a doctor and nine nurses holding liam down because they were trying to give him a needle, so they could pump fluids. he was just screaming, his arms were kicking, and i realized he’s already a fighter.

what was it like to wait for the diagnosis?

i was terrified. i didn’t know [what to think] because [the doctors] were saying one thing, and then they would come back with a different diagnosis. we must have seen four different pediatricians.

once we found out [that it was cf] we knew that we had an uphill battle.

they tell you not to look on the internet and not to dig into anything and, of course, that’s where my head went. i just balled. after, i was like ‘okay, we can’t cry about it. this is happening’.

that’s a tough diagnosis for a new mom.

just getting used to everything was huge. i was extremely nervous at the beginning because i didn’t know what was going to happen. my head just exploded.

after we found out that liam had cf, we went to mcmaster in hamilton for training on how to take care of him.

at the beginning [the treatment] was half an enzyme tablet and then i would give him his bottle. he still had to have enzymes at three weeks old to process the formula. then it went up to one and now it’s gone up to three enzymes with literally every meal, every snack. every new medication i have to figure out the order — like, okay, so do i put it before this [other medication]? it’s just sticky notes everywhere.

i am very thankful that i have an amazing support system. my parents, my brothers and sister-in-law are all amazing. if i need to cry or need a couple hours, everybody comes over and pitches in.

how is life different for liam?

cf affects every single part of liam’s body, pretty much. from his pancreas to clubbing on the fingers.

before he eats, he has to have enzymes to break down his food. [it comes in a pill] but right now he doesn’t swallow it. what we’ve always done is, since he was a baby, we just open it up, and then mix the granular part with applesauce. so he has applesauce every day and he loves it.

he’s also on an inhaled medication which means that every morning, he puts on an oxygen mask to help open up his lungs so he can breathe better. we do that for about half an hour to 45 minutes in the morning, and the same at night. then we do physiotherapy with him. this means patting six or eight points on his body to open up his airways and help him breathe better. it’s called clapping. it starts on the top of his chest [ deana taps liam gently on the top of his chest ], then the patting goes under his arm, then down under his rib. then we flip him over and we do it on his back, top and bottom. this breaks up the mucus so he can spit it out.

sounds like an intense routine.

every morning we’re up at six o’clock. it literally takes up to an hour [to get ready]. his oxygen runs for about a half hour and then physio can take half an hour to 45 minutes because we have [to clap] all those spots. at night, it we start around seven o’clock, we’re done by eight, and then he’s in bed. if he is sick or congested, it takes longer.

liam, tell me what you have to do every morning.

liam: [mom] gives me medication — it helps me. and my mask.

how is the mask? is it scary?

liam: no, it helps me breathe.

deana: when you can’t breathe, what do you say?

liam: i want my oxygen.

deana: even in school, he was asking all the time. he knows to ask.

what is liam’s perception of cystic fibrosis?

he knows that he has it. he talks about covid and how he’s not allowed to go out because of it and how the virus might affect him even more.

has the pandemic changed anything about liam’s care?

really, it’s no different. now, everybody has been wearing masks and staying six feet apart. we’ve kind of already been living that life already. when someone’s sick, we stay away from them. when liam goes out he normally puts a mask on. life is really no different.

it can sometimes feel isolating and i’m sure it’s a lot harder [for liam], because he had other friends and now there’s nobody. there were kids walking today to school and he told me ‘i want to go back’, but i had to remind him we’re keeping him home, and he started crying.

eventually we’ll get back. [liam] talks to me about it, he understands.

right up until the last day i was telling myself i was going to send him and then, all of a sudden, i realized i couldn’t. you have to weigh the risks: if he gets covid, it’s deadly. cf already affects his lungs and covid would be a double whammy. i just don’t want to take that chance.

we are starting online school. we have been doing some workbook stuff with him already over the summer and i’m hoping [school] will just flow right into everything that he’s been doing.

what did school look like before covid-19?

when we first went in last year i was really, really nervous. just because he had never been away from me — he’s never been in a daycare or anything.

he went to school later because he was sick, so i think he missed the first two weeks of school. i showed the teachers what they needed to do, like the clapping physio and how to give him oxygen if he needed it. they told me they would do whatever it takes to keep him there because he loved it. liam would walk in the classroom and just light up; every morning he couldn’t wait to go to school. [he loves the people]. we’d be walking down the road and somebody would be like, ‘oh hey liam!’. he just knew everybody.

tell me about liam’s book.

i wanted something that was easy for him to explain to the kids at school what was physically going on with him. liam said, “what about a children’s book?”

there was nothing in canada [geared to children] that could explain cf. i found megan [our publisher], and she loved his story. one thing led to another, and his story kind of just happened. liam was really part of the creative process.

how has cystic fibrosis affected how liam is perceived by others?

people have been really good. i mean, he doesn’t even look like he has [cf].

the whole month of may [the teachers] were amazing. even though the kids weren’t in school, we were still doing online learning, and every day for a month the teachers did [a small lesson] about cf. the kids learned every little thing that goes on with him.

what are you hoping the future looks like for liam?

there’s a new medication called trikafta — that’s what we’re really hoping for. it would help almost 90 per cent of cf patients in canada, and now [the government] is looking at it for [kids]. if liam can’t get it, he will probably need a lung transplant eventually. it’s really scary to think about.

we put out the children’s book to raise awareness. we want to do other books as well — one on isolation and then one on [living with] covid.

liam’s book liam, strong as a tree, and information on the upcoming golf tournament are available here.

if you or someone you care about is living with cystic fibrosis, connecting with a support network can help to not only learn ways to better manage their health, but also share experiences with others. some canadian resources include cystic fibrosis canada.

what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn

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living with cystic fibrosis at 5-years-old

liam wilson, with the help of his mom, created a picture book to teach kids about cystic fibrosis.

how was liam diagnosed?

cf patients dying because canada won't pay for drug

if you have cystic fibrosis, covid-19 is a death threat

what was it like to wait for the diagnosis?

that’s a tough diagnosis for a new mom.

how is life different for liam?

sounds like an intense routine.

liam, tell me what you have to do every morning.

what is liam’s perception of cystic fibrosis?

has the pandemic changed anything about liam’s care?

what did school look like before covid-19?

tell me about liam’s book.

how has cystic fibrosis affected how liam is perceived by others?

what are you hoping the future looks like for liam?

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living with cystic fibrosis at 5-years-old

liam wilson, with the help of his mom, created a picture book to teach kids about cystic fibrosis.

how was liam diagnosed?

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cf patients dying because canada won't pay for drug

if you have cystic fibrosis, covid-19 is a death threat

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what was it like to wait for the diagnosis?

that’s a tough diagnosis for a new mom.

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how is life different for liam?

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sounds like an intense routine.

liam, tell me what you have to do every morning.

what is liam’s perception of cystic fibrosis?

has the pandemic changed anything about liam’s care?

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what did school look like before covid-19?

tell me about liam’s book.

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how has cystic fibrosis affected how liam is perceived by others?

what are you hoping the future looks like for liam?

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