Flight home a nightmare for parents of dying boyBy TIM BUCKLAND
New Hampshire Union Leader
December 25. 2011 10:40PM
The trip down to Florida on a Southwest Airlines flight last week, in which Nicholas, who is suffering from Batten disease, sat in a protective travel chair, had been no problem. But coming back on Thursday, the Dainiak family was told by Southwest staff that the boy would either have to forgo the protective seat or get off the plane because the chair was not compliant with Federal Aviation Administration rules.
'It was a little shocking,' said the boy's father, Chris. 'We flew down with this exact chair six days before.'
They were trying to fly two days before Christmas, which is one of the busiest travel days of the year. Chris and his wife, Heather, had to make a quick decision - do they get off the plane and risk not being able to find a flight home or do they spend the three-hour flight with the two of them propping Nicholas in place in a standard seat?
Given that this might be Nicholas's last Christmas alive, Chris said, they stayed on the plane to get him home in time for the holiday.
'There was a high likelihood we'd be stuck in an airport with a very sick child for a very long time,' he said. 'We knew that the chances of us getting off that plane and getting home in time for Christmas were pretty poor.'
Nicholas got home safe, but in photos the family shared with the New Hampshire Union Leader, Heather is seen crying because she was so upset.
'We felt frustrated,' Chris said. 'You feel helpless because you can't protect your child the way he needs to be protected.'
Southwest spokesman Brad Hawkins said Sunday night that the airline regretted the decision.
'We are working directly with the family after sincerely apologizing and issuing a full refund for their less-than-positive travel experience,' Southwest spokesman Brad Hawkins said Sunday night. 'We certainly will take away any potential learnings from this experience in our constant evaluation of how to provide the best possible customer service, which is second only to the safety of every passenger.'
Nicholas was born normal and healthy, Chris said. Then, at age 4, he started having seizures. By five, he was suffering from macular degeneration. After testing, he was diagnosed with Batten disease, a cruel sickness with no cure that increasingly debilitates children and results in death between the ages of 8 and 12.
When the family went to Disney World last year, 'he was able to walk some, he was able to interact and he was able to eat on his own,' Chris said. 'The time before that, he was able to run around.
'Every six months, it's like we're looking at a completely different child,' he said.
The family has set up the Our Promise to Nicholas Foundation, which raises money for research to find a cure for Batten disease. The foundation's website, which features Nicholas's full story, is ourpromisetonicholas.com.
Chris said he was particularly frustrated on the flight from Orlando because he was told that the decision to provide the family with the ultimatum about the chair was made not by the pilot or an employee on the plane, but by a customer service manager directing staff over the phone.
'I know they were trying to follow the rules, but there was such confusion on their part,' he said. 'It was somebody on the phone. I'm confused as to how the decision was made.
'They put Nicholas in more danger than he had to be,' he said. 'I really didn't want to cause any issues. We just wanted to come home.'
Hawkins said he didn't yet know the particulars of how or why the decision was made in Nicholas's case.
In general, Hawkins said, 'while there are guidelines and policies and procedures, it is always and ultimately the captain's judgment call as to how to correctly apply FAA guidance in the safe and compliant operation of the aircraft.'