The boy who had to be taught to eat

As  I sat down to put the final touches on this post, I realized this interview was not like any other on Autistic Globetrotting. The reason is that over the years, we’ve interviewed many families with medical issues but have never showcased a family that had to travel because of them. Furthermore, what struck me the most about Kevin’s (Daniel’s dad) answers was not only how incredibly determined he is to fight for his son but how positively he still views the world despite the difficulties he and his family have had to face.

Daniel Harrison lives with his parents and sister, Hannah in Nottingham in the United Kingdom. Although he started exhibiting telltale symptoms like vomiting for seven months, it took his doctors another ten months to diagnose him with extreme acid reflux as well as autism. By then he was hospitalized, fed by feeding tube and gotten addicted to his nasal tube.

After trying for two years to get Daniel, the help he needed in the UK the Harrison family traveled to Graz Austria last year to seek further help there. The doctors at the NoTube unit at the Graz University Hospital were successful in removing the tube and acclimating now five-year-old Daniel to drink liquids. Encouraged by the progress, the family is planning a second trip to Graz later this year to continue Daniel’s therapy.

We find that the secret to approaching flying is to be ready well. Rushing around tends to stress people, it’s far more important that you give yourself time for everything. Even though we only live two hours away from the airport, we stayed at the airport overnight. If we are relaxed, Daniel will be far more relaxed.

What accommodations and help did you get from the airlines?

We always let the airline know as far as in advance as possible that we are coming. We get a letter from our consultant, so we can take Daniel’s milk and meds on the plane. We also then get fast tracked through the airport, again if we are all relaxed and not rushing everything is far easier. We get seated first on the plane also before the crowds get on.

How did you keep Daniel entertained during the trip?

Daniel goes everywhere (well – we do!) with his Nintendo DS, Laptop and DVD player, we also carry a backup also in case the batteries run out.
In Austria, we made sure we stayed at a hotel with a wireless connection, that way Daniel could watch movies and YouTube on the internet. To be honest after his medical treatment, he was exhausted most evenings.

Did you get a chance to sightsee at all?

We loved Graz, the architecture of the old buildings was great to see and we spent lots of time looking at them. The  Schlossberg’ amazing and the view over the city was beautiful. We spent a considerable amount of time sitting outside restaurants relaxing and just taking in a different culture. We went to the swimming pool on the edge of town, and that was nothing like anything we have in the UK.
We didn’t go to Vienna; that is something we plan to do in August. Daniel loved the parks and especially the park outside the Kinder clinic.

Were there any particular souvenirs or mementos Daniel got from the trip?

The most extraordinary memory Daniel got from Austria was his feeding tube being removed. It’s that simple.

What advice would you share with our readers?

Never be afraid to listen to your heart, if you want to try something to help your child or for yourself do it! – This is your time.

I had an epiphany – I was lying in bed one night wondering how I would afford to get Daniel to Graz when I decided there and then that I was going to take Daniel’s story public and try and fundraise to help him. We had lost all our savings looking after Daniel for the previous four years, I wasn’t comfortable doing this, but my son came first, so the decision was made easy for me.

Within 67 days I had raised thousands and was in a position that we wouldn’t have to worry about Daniel’s treatment abroad.

Something switched on in me, and I was speaking publicly at events for Daniel, having TV crews following us around, being interviewed on Radio and Newspapers around the world, all the time working and caring for my kids and trying to be the best husband I could be.

We made a deal with an Austrian reporter who offered to pay for flights and accommodation, we were offered a room to stay in free of charge, but when we got there, it was a room, without curtains, hot water, and beds. Luckily the Hotel Gollner came to our rescue and saved us – even though it cost us thousands in hotel fees we were not expecting to pay.

My advice is always to have a backup plan in place.

So my advice is never to give up, work as hard as you possibly can, never taking no for an answer and good things eventually happen. When you wake up in the middle of the night in a dark place, and you have a thousand worries in your head, don’t listen to them. Rid your head of all negativity.

We live in a world of mass media, all offering opinions and their viewpoints,  people offering you advice, opinions, but you have to cut through all the challenges we have each day facing us and listen to your voice, yours alone. And follow it!

Finally – If you see a child misbehaving – don’t judge the parents or child. You never know what their story is.

We would love to thank the people of Graz; we loved the people there, they treated us exceptionally well, from the group of students who recognized us one night to the lady who got the wrong end of the stick completely and stopped us and gave Daniel a lollipop! We cannot wait to revisit again; we even considered moving there, but we could not leave our lives behind here. The NoTube team in Graz at the University Hospital is a genius, and I saw miracles performed daily.

2013 Update:

I’m sure that many of you remember the story of Daniel Harrison, a UK autistic kindergartner boy who had been fed via tube for several years.Although doctors in the UK had almost given up on the boy, his parents fought to take him to the NoTube unit at the Graz University hospital in Austria that specializes in cases like Daniel’s.

Last year after a month of intensive therapy Daniel started drinking for the first time.But his parents did not leave it at that they wanted him cured.They saved enough money and went to Graz again this year.The result was miraculous.
Daniel is finally eating!

So naturally we asked his dad for a follow-up interview.

What was the purpose of the trip this time around?

We felt it was important to try to get Daniel to eat especially after the previous trip which resulted in him starting to drink and the removal of the feeding tube.WE firmly believed it was a possibility.

It was the same place we were going to but this time, we were hoping for an even better outcome.I can tell you this trip ended up like nothing we’ve ever had or will again experience.

Where did you stay?

We stayed at the Hotel Gollner – a great hotel that made you feel special and loved Daniel.They looked after us like family and catered to our every need.

How has this trip impacted your family?

I can say that the repetitive treatments during the day were very stressful for all of us and incredibly tiring.but by the end of it whatever doesn’t kill you, certainly makes you stronger.We’re in a much better place as a whole now.

How did this ‘journey’ change you as a parent?

Well, Daniel has started to eat, so our lives have dramatically changed.What looked like a grim outcome has turned quite the corner – we have hope for him now!

What is Daniel’s favorite new food?

Chocolate dessert-it didn’t take him long to figure it out.

As a parent to an autistic child, what are your hopes for the future?

That Daniel stays healthy and is happy. It’s that simple.

Margalit Sturm Francus

A reformed dentist who gave up pulling teeth to show her son the world! Need tips on how to #travel with #autism? Follow me on Instagram & Facebook