The boy who had to be taught to eat : Q&A with Kevin Harrison

From the editor:
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.

About Kevin and his son:
Daniel Harrison lives with his parents and sister, Hannah in Nottingham in the United Kingdom. Although he started exhibiting  telltale symptoms  like vomiting by seven months, it took his doctors another  ten months to diagnose him with  extreme acid reflux as well as autism. By then he 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.

How did you prepare Daniel for the flight?

We find that the secret to approaching flying is to be prepared well. Rushing around tends to stress able 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.

submitted by K. Harrison

submitted by K. Harrison

 

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.

submitted by K. Harrison

submitted by K. Harrison

How did you keep Daniel entertained during the trip and in Austria?

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 wireless connection, that way Daniel could watch movies and YouTube on the internet. To be honest after his medical treatment, he was very tired most evenings.

submitted by K. Harrison

submitted by K. Harrison

Did you get a chance to sightsee at all—what did he like best and what will you want to see when you return?

We loved Graz, the architecture of the old buildings was great to see and we spent a greta deal of time looking at them. The Schollsberg was amazing and the view over the city was wonderful. We spent a great deal of time sitting outside restaurants relaxing and just taking in a different culture. We went to the swimming pool on the edge of time 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 Kinderclinic.

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

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

submitted by K. Harrison

submitted by K. Harrison

What advice could you share with other readers?

This will be a long answer, so bear with me..

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.

Basically my advice is to always have a back-up plan in place.

 

So my advice basically is never 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 view points, people offering you advice, opinions, but you have to cut through all the crap we have each day facing us and listen to your voice yours. 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 recognised 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 genius and I saw miracles performed daily.

submitted by K. Harrison

submitted by K. Harrison

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 pretty much 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 afer 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!

 

submitted by K. Harrison

submitted by K. Harrison

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 get Daniel to eat especially after the previous trip which resulted in him starting to drink and the removal of feeding tube.WE strongly believed it was apossibility.

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 have or will again experience.

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

How has this trip impacted you as a 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 mich better pace as awhole now.

submitted by K. Harrison

submitted by K. Harrison

How did this autism ‘journey’ to get rid of the feeding tube change you as a parent?
Well Daniel has started to eat, so our lives have dramtically 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.

Comments

  1. Dave Woodman says:

    This man is an inspiration to many, the work he has done, fighting the establishment whilst raising his kids and endlessly raising awareness of Autism is a sight to behold and should inspire us all.

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