Louis Tomlinson’s “Fly High Buddy” Interview Transcript.


Yesterday I published an article on Inquisitr that received an incredible amount of attention. The article concerned One Direction star Louis Tomlinson and the support both Louis and his mother Johannah (Jay) Deakin had given to the family of nine-year-old Harvey Hex who was sadly claimed by childhood cancer neuroblastoma.

Harvey’s mother Sarah agreed to being interviewed by me and the interview made up the bulk of my story.  To date the Twitter imprint for the article is over 2.5 million and I found myself in the bizarre situation of trending all over the world.

I was shocked, surprised and if it doesn’t sound too immodest thrilled to see this happening.  Of course when writing for a trending news outlet you can’t simply use the interview and nothing else and people have indicated that they would like to see the full interview.  I am of course delighted to do this for one reason.

I can’t even begin to tell you how honored I am that Sarah agreed to this interview. We should never forget that Sarah’s family are dealing with a huge tragedy in their lives.  Little Harvey fought his illness with everything he had and sadly he ultimately lost that fight.  Sarah and her family are still trying to work out how to fill the huge whole that Harvey’s loss has left in their lives.

More than anything this is the story of two amazing family’s,  Sarah Hext’s and Louis Tomlinson’s.  What makes this story so incredible for me is how a world renowned star like Tomlinson is so securely ground, kind considerate and so very very thoughtful.  Sarah says that Louis, his family and the amazing charities that have supported them have given her family the most precious gift of all.  Sarah says her family have been given a host of special memories of Harvey.  Those memories are simply beyond price.

Below is the full interview.  All I have edited is grammar and spelling, these are Sarah’s words.  My questions are in bold.

Tell me a little about your family.  What sort of little boy was harvey?  How close are your kids?  What do the twins like to do?  

David and I met in 1995 and were married in 1997. In October 2002 our Daughter Olivia was born and in July 2006 she became big sister to our beautiful identical twin boys Spencer and Harvey, the boys were diagnosed at birth with Down Syndrome. The diagnoses was a huge shock and we had been thrown into a world that we knew nothing about, but it wasn’t long before the boys personality’s started to shine through and we all fell head over heels in love with them. The early days went past in a bit of a haze, having twins is hard work!
All three children were incredibly close and Olivia was a very proud big sister, we worried what affect the boys diagnoses may have on Olivia at first, after all she had two brothers with special needs that took up a lot of our time but she took to them like a duck to water, they were just her little brothers and she was always ready to show them off at every opportunity. Olivia never complained about the lack of attention she received, she was just happy to help us with the boys in any way she could.
Spencer and Harvey were a real double act, they went everywhere together and would always be up to some kind of mischief. Dave once decorated a bedroom and when he had finished he came downstairs to have a cup of tea, in the meantime the boys snook upstairs and found a 1/2 full tin of pain without a lid on, they had a paint fight and ended it by pouring the tin of paint over Harvey’s head!
They would love to play hide and seek with Harvey once running off in a shop and us in complete panic searching for him, only for someone to point out that the little mannequin in the shop window had just moved! Both boys were full of fun but Harvey was always the instigator of trouble and fun, he had spirit and wasn’t frightened of anything where as Spencer was always far more sensitive. The boys would love to confuse their swimming teacher by telling her they were each other! Spencer and Harvey were two halves of a whole and something that always gave me comfort was knowing they would always have each other, they would never feel that they were different because some one else was the same as them.


How did you find out about Harvey’s illness?  What effect did the news have on you all?  How did you cope with the illness?
In 2010 a month before Harveys 5th birthday.  Harvey had been poorly on and off for months and had a very distended tummy, he didn’t want to walk and wasn’t sleeping at night but the Doctors always put it down to a bug or food poisoning, after around 7 visits to the GP and twice going to A&E insisting that something was wrong they told me that they could find nothing untoward and if I was still concerned to go and see a paediatrician.
The Paediatrician referred us to a local hospital for tests and within a few days we were referred to Bristol Children’s hospital and given the devastating news that they believed our little boy had Stage 4 Neuroblastoma – a very aggressive childhood cancer with a survival rate of 20%. The cancer had spread to Harvey’s bones. Straight after we were given the news the Doctors asked for Spencer to be tested, thankfully he was clear of cancer but he will be monitored for many years to come. The actual diagnoses took a few weeks as there are no other cases worldwide of any child ever having Down Syndrome and Neuroblastoma, Kids with DS don’t usually get solid tumours. It was unheard of.


The news was devastating, the treatment protocol for Neuroblastoma is harsh, we were looking at 18months of intensive treatment. After 8 rounds of punishing chemotherapy then surgery (Harvey’s operation was 14hrs long) we were told that the treatment was not working, two more rounds of chemo was then followed by MIBG therapy in London, this entailed Harvey having a high dose of a Radioactive  drug and having to stay in a lead lined room until his levels were low enough for him to mix with the general public.  As parents we had restricted contact with him for our own safety although we did stay with him as much as we were allowed. After further tests Harvey was given an oral chemotherapy for 18months and his Neurablastoma remained stable, never cured but stable.

Over the years Harvey had many blood transfusions, a stem cell transfusion, platelets and general aesthetics but he would often wake from a GA and ask to go to school. He did manage school now and then and Spencer was always so thrilled.That whole period of time took its toll on all of us.

My Mum moved in with us and looked after Olivia and Spencer as we were always in hospital or London and Dave was eventually made redundant from his job- this often happens to parents of sick children.

As Harvey didn’t follow the treatment protocol we were taken off the Neuroblastoma trial, this meant that all treatment options were no longer available to Harvey so we started the mamouth job of raising £300,000 incase we needed to take Harvey to the USA or Germany to access the treatment privately. [We currently have £200,000 in a fund that will be used to Help children in Harvey’s situation].

We managed Harvey’s illness day by day but for us it put the fact that the boys had Down Syndrome in a completely different context, the Downs didn’t matter to us at all and to be honest made Harvey who he was, so for that I am grateful.

How did you meet Jay?  I assume Jay got Louis involved but how did that happen?
I first met Jay at a Believe in Magic Party at London Zoo in Dec 2014, Louis had asked her to attend the party for her as they had funded the event but he couldn’t be there as he was on the X Factor that night. Jay came over and introduced herself and I think Harvey and Spencer stole her heart there and then. Only a twin mum can really understand the impact that losing one twin could have on a family and of course Jay having two sets of twins made her fully qualified to understand my fears.
Harvey has a Facebook page and soon after Jay sent a message saying that she had been thinking of us a lot, we started chatting and soon build up a friendship. Louis became involved through Jay and started supporting Harvey by doing things like wearing a Gold ribbon for Childhood cancer awareness.
Tell me about the Cinderella Ball.  Were the whole family Louis & Johanna’s guests at the event?  How was the evening, what was the experience like?
Yes the whole family were guests at the ball. For us the Ball was the stuff that fairy tales are made of. We were all taken to the beautiful Langham hotel in London and the boys were given Ralph Lauren suits to wear, Olivia was given a made to measure silk dress.
Cars were at the hotel to collect us and we were taken to the beautiful Natural history Museum. When we arrived  there were 100’s of 1D fans at the gates and as we walked up the red carpet Harvey turned to them, stopped and gave them a bow! Spencer turned to the crowd an shook his bottom! Everyone was cheering and clapping them, it was magical.
Inside we had a champagne reception and the kids were entertained by Dynamo. Olivia was busy star spotting and she has made some lovely friends through Believe in Magic so spent time running around with them.
Then we were called to the main room and all the children walked down the main staircase in true Cinderella style. I have to say it was just breath taking. So much thought had gone into the children and there was a section of the room filled with toys, face painting,arts and crafts. There was also a photo booth which was a great hit. The food was beautiful and again there was food especially for the kids. There was a really fun auction and then Ben Heynow sung a few songs. Unfortunately we had to leave before 12 as Harvey couldn’t keep his little eyes open but it was a night we will treasure forever.


I understand that at that event Louis and Liam and Jay tried to spend time with all of the children.  Is that correct?  How did they deal with getting round so many people etc.  What did they say?  Were they comfortable?  How did the children react?
All the children were greeted at the foot of the staircase by Louis and Liam, many had photos taken with the boys and then we sat for Dinner. After dinner the boys were having more photos with the kids, they spent time in the arts section with the kids and lots of funny photos were taken with the boys in the photo booth, Ben Heynow also joined in the fun. Liam had his face painted as a tiger and the boys were in fine spirits. they were just chit chatting as anyone else would, asking the kids if they were enjoying the evening, were they feeling ok? etc.  They seemed completely relaxed and I am sure they enjoyed the evening as much as we did. Jay was talking to everyone as were Meg and Jean [founders of BIM].  Cars were waiting outside to take anyone back to the hotel when they were ready to leave.
I notice on your Facebook post you talk about Louis and Jay providing support to Olivia and Spencer.  How is that provided?  Do you have regular contact etc?
Jay and some of her family came to Harvey’s celebration. We played “Best song ever” in the church and had a little smile to each other whilst it was playing. We exchange texts fairly regularly and a week after the service Jay called and said that Louis had two tickets for the X Factor finals and they wanted to offer them to us, we decided it would be good for the kids so we accepted.
On the Saturday we went to the Believe in Magic Christmas party, it was hard without Harvey but they are a fantastic charity that continue to support siblings even after the sick child has passed. That’s so important to family’s. After the party Jay had booked us into a beautiful Central London hotel and Dave and Spencer went swimming and out for dinner whilst Olivia and I were whisked off in a luxury car to a VIP X Factor party and then to see the show. The whole night was a very welcome distraction and although we were so so sad we did manage to have a fun weekend, never forgetting Harvey though.
Jay and Louis do all these amazing things and never ask for anything in return, what could you possibly give them? We decided that we would send them a treasured colouring that Harvey had done and Dan has laminated it and its used as a family placemat. I loved that idea.
LouisTomlinson Harvey3
Tell me about the Disney trip.  How did Harvey react, did you all have fun?
Disney was awesome. We didn’t tell the boys we were going until just before and they were so excited. Disney was Harvey’s favourite place. There were about 10 Believe in Magic family’s who went and the kids were given a suitcase each full of beautiful clothes.  We stayed in The Pink Palace hotel which is just stunning,everything was taken care of. We were there Monday-Thursday and we had a ball. There were characters walking around the hotel and at night we all went to the top floor of the hotel to watch the Fireworks. Harvey and Spencer loved the Frozen show so we went to that a few times. Some of the girls had lunch with Cinderella but my boys just wanted to go on the rides over and over again!
Harvey was a real thrill seeker and the faster the rides the better. Jay and her family joined everyone for the last few days. We had the best time there and the kids were just blown away by the whole experience.
Tell me about the microphone, how it was delivered and Harvey’s reaction.  Why was this a big deal for him?  Were there gifts for the other kids too?  If so tell me a little about that.
On the way to London I sent Jay a video of Harvey singing to 1D in the car, “Best song ever.” I understand Louis was with her when she received it, when we arrived at the hotel (another beautiful one) there were two microphones waiting for the boys, it was so thoughtful and  there were also some beautiful girly gift’s for Olivia. The boys started playing with them immediately and took them to the concert that night. Spencer often plays with his Microphone and I love the photo we have of Harvey with his. Gifts sent with such thought behind them.
What is your impression of Louis as a man?  Does he love kids as much as he appears to?  How do children react to him?
Louis is kind and considerate. He comes from a large and loving family and I guess that helps him to stay grounded. Louis younger twin sisters are also kind sweet girls so I think it runs in the family. When you come from a large family I think you feel at ease with children and he seems to be able to make people feel naturally at ease. Olivia loves Louis, she giggles a lot when she sees him, he’s in 1D and she’s 13yrs old! Lol.  Harvey and Spencer didn’t really appreciate the fact he is a global star but that makes it even more genuine for me as it shows Louis not doing it for the glory.
Louis Tomlinson Harvey1
Tell me about Harvey’s 1D concert.  Did you all manage to go?  How did Harvey react?  Did you all get to go backstage to meet Louis and the rest of the boys?  How were you treated?  
We stayed in the beautiful Kensington Hotel . There were gifts for the children and Louis’ PA called to give us all the arrangements. We were made to feel very special. These are hotels that we would never normally be able to experience.
The Concert was something I would never have taken the boys to for fear of it being too loud or us having to leave and spoiling Olivia’s fun so we took my niece in case she needed to take the boys out for us.
Louis had offered us the Green room should the boys decide it was too much for them. We were taken to the friends and family room before the show and then back stage to meet all the boys. It was a bit of a whirlwind meet as there were many other fans waiting to meet the boys. After that we were taken to our seats right near the stage and the concert began. All the children absolutely loved the concert and Harvey was up dancing to many songs. It was a lovely experience and one that I would not have chosen to take the boys too but I am so glad we did. After the concert Louis PA came and showed us to our waiting car. Everything we needed was taken care of.
The next day a car was sent for us to take us to a Believe in Magic party in Hamley’s toy store. It was a perfect weekend and we made some beautiful memories.
What are your thoughts about how Louis is being treated by some sections of the media?
It makes me angry. These people don’t know the real Louis, to them its a story but its actually quite hurtful to the people that know different. Something they don’t understand is that he helps so many familys and the fact that he doesn’t shout about it makes him even more special, he doesn’t do it for the glory he does it because he wants to help people. Jay once told me that on a bad press day Louis will often say to her. “Come on mum, lets make someone happy today”
What do you think people should know about Louis and Johannah?
How genuine they are. They go out of their way to help people and expect no recognition for it. Louis has stayed grounded and I think that’s thanks to great parenting on Jays part. He’s a lovely family orientated guy. Jay doesn’t have to help us or anyone else but she does it because she wants too and she is truly grateful for what she has.
Tell me about your charitable efforts in Harvey’s memory.  Links to any website, just giving page etc.
Harvey only passed on 29th Nov, I am hoping to set up a charity in his name providing treats for poorly children but haven’t yet got this up and running.
http://solvingkidscancer.org/ hold Harvey’s appeal page, money donated to them will pay for research into Neuroblastoma and other childhood cancers.
http://upsanddowns.net/ are the charity that have supported us since the boys were born and this is the charity we collected for at Harvey’s Celebration.
What question do you really wish I had asked and didn’t?  What would the answer be?  Feel free to add anything you think relevant or that you want people to know about.
When Jay knew that Harvey didn’t have much time left she came to the house with her Twin girls [Daisy and Phoebe], they took a day out of school to come and spent all day playing with Olivia, Harvey and Spencer.
Louis sent Olivia a Pandora bracelet and lots of toys for the boys. Louis driver brought them here and came in to say hi, he’s a lovely guy and also came to Harvey’s celebration, in fact he arranged the balloon release on that day. As they left we talked about doing a winter wonderland for Harvey on our decking but sadly there was never the time. We left for the hospice that day and only had two other days at home.
I cant tell you the importance of having things to look forward to and Jay and Louis have given us many of them. Louis has also offered us a holiday at Centre parcs whenever we are ready. They hold a very special place in my heart and Jay keeps in regular contact by FB or texting every now and again to see how we all are.
Louis and Jay have given us precious memories with Harvey and all of our children and that is priceless, we have so many beautiful photos of Harvey to look back on in some amazing places!  I do feel that I have made a genuine friend in Jay and she certainly doesn’t do it for the glory.
I once asked Jay if any of the boys knew Ant and Dec as Harvey loved them. A few weeks we had a personal message from them to the kids and wishing Harvey well.

7 thoughts on “Louis Tomlinson’s “Fly High Buddy” Interview Transcript.

  1. charlinbenjamin

    I absolutely loved this article! You made the entire fandom very happy by letting us see a glimpse of the private Louis Tomlinson and how his heart is bigger than we could have ever imagined! This is the kind of journalism this planet needs. 💘


  2. sehirablue

    and again you have made me cry at work *shakes fist angrily*. But seriously, thank you so much for not only continuing to support Louis and Jay, but also for showing such compassion with Mrs. Hext.

    Liked by 2 people

  3. Audra Kostic

    Hello – I love to reblog posts but because of your explicit request I would like to get you permission – would you allow me to reblog this?
    On my blog – passionate about music – I love to share other people’s experiences with One Direction – all my blogs will get automatically posted to my twitter @aud2bme & also my tumblr blog – Passionate about 1D.
    thank-you very much.

    Liked by 1 person


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