Shelley Bowen, Director Family Services & Advocacy

Brett Smith, Operations and Communications Lead

May 27th, 2020

Meet Ollie

How old are you now?

I’m twenty-eight.

How are you staying occupied during COVID-19?

I’ve been in the house for ten weeks. I am lucky enough to still be working from home.  I’m in IT at school.  It’s basically been a virtual school which has been chaotic. I am still creating documentaries.  I have a few planned out for next year. 

I collaborated with a friend of mine who was doing a story for the BBC on how people are coping with COVID-19 earlier in May.  It could go regional or national. That was pretty cool.

I am currently developing a documentary on the Cardioman Trial in Bristol, which is about an hour’s drive from my home.  Due to COVID-19 all the work is being done virtually. 

Do you enjoy driving?

I love to drive.  I didn’t realize how much I missed it until I spent 10 weeks locked up at home.  I can’t wait to get behind the wheel again.

For as long as I have known you, you have always had a camera of some sorts in your hands.  It doesn’t surprise me that you went into a field that has something to do with media.  What was the focus of the degree you received in school?

It was in media production which includes a bit of everything.  It covers graphic design, filming, editing, photography, magazine production...  It was a great course and really opened the door to a lot of opportunities.

Enter the dog…What is your dog’s name?

His name is Loki.  He gets into a lot of mischief.  He lives up to his name.  He is a greyhound rescue dog.  We decided that we wanted a dog and also decided when we got one, it would be a Greyhound rescue.  We know he is ex Irish because he has both ears tattooed. From what I understand Greyhounds born in Ireland are bred purely for racing, which I did not know.

Is he super active?

Surprisingly not.  He gets two twenty-minute walks a day and he’s all set.  He gets one good run once a month.  He’s pretty low-key.

When are you getting married?

We are planning on getting married in May of 2021.  We’ve selected a lovely local venue with a small gathering of family and friends.  We have most of it planned.  It would be more accurate to say my fiancée has it sorted.  I pretty much just have to show up.  I’m happy with whatever she decides as long as she is the one coming down the aisle.  We’re pretty wedding poor right now.

That leads me to the next question, are you coming to the conference in 2021?

I’d like to.  I’ve been to two conferences, one in 2004 and the other in 2014.

Do you miss the conference on the years when you can’t make it?

Yes, it is so much fun.  There’s a great balance to learn more about BTHS and to get to know the families.  Yeah, I really miss it when I can’t come.  It’s the only opportunity when I get to interact with the lads in America and Australia who are closer to my age. 

How is the conference similar or dissimilar to the Family Days in Bristol?

We have family days in Bristol, but it is much smaller than the conference in scale and also in terms of length of time.  Family days in Bristol pretty much are just that one day, there is a lot packed into one day, they are lovely, but you come and go in the same day.  It’s lovely to see people I haven’t seen in a while but there isn’t much time to catch up. 

With the conference there are many more people there who I know and plenty more that I have never met.  I always find the scientific sessions interesting.  It is a great opportunity to learn about the research being done on BTHS. It’s good to speak with the people who are doing the research and I think it is good for them to meet the people who are living with BTHS.

The other plus is the conference is spread out over an entire week.  This gives you a chance to form a meaningful relationship with people in the community.  You can’t do that in one day.  I keep up with people I met at the conference.  We have a big group chat which is lovely, but it is not the same as getting together in person. And when that happens, it only takes a moment to catch up where you left of the last time you saw one another.  The other thing that strikes me as unique about the conference is no one is ever left out.  I mean, even if you are coming for the first time, it’s like you have always known each other.  It’s really hard to explain, but everyone fits.

The first day is the day to reconnect or connect for the very first time.  The rest of the week just deepens the connections because you have time to hang out with each other.  It isn’t like a meet and greet and then you’re gone.  I like that we have an entire week for the conference.  It isn’t too long.  If anything, I am always left wanting more time together.

How have things changed in terms of your healthcare now that you are an adult?

I am still seeing the team in Bristol.  I shifted from pediatrics to adult care about a decade ago.  That was a bumpy transition.  All of the sudden I was seeing new doctors who have no familiarity with BTHS.  In pediatrics, I always saw the same doctor.  With adult care it seems I never see the same doctor twice.  I saw the same doctor for my transplant for as long as I recall.   I trusted him, we had a relationship and when I reached a certain age, I had to begin seeing someone new.  I had to leave the doctor who was most familiar with me and with this really complicated condition to start all over again and I had no choice.

On the plus side, since I moved out of my parent’s home, all of my doctors are closer, about an hour away, including the team in Bristol.

You like to travel, is there any particular place you would you like to go?

I’d like to visit Japan, Africa, Australia, New Zealand.  I would love to see more of America.  I have only been to Florida.  America is a big country.  You Americans will say something like “Oh, it’s just down the road” when someone asks where the nearest grocery store might be.  After walking for about an hour you start wondering when you are ever going to get there. 

Last question, how would you introduce yourself to someone for the first time?

Hi, I’m Ollie. I’m twenty-eight.  I’m an IT tech.  I’m a massive gamer.  I love creating videos and photography.  I love to socialize with people.  I love meeting people.  I’m always up for a laugh.  I love living traveling and learning new things about different cultures.  How about you?