Thank you everyone for your support of Nicholas.
We are now home safe after our flight back from Disney World.
Nicholas is doing well, but Heather is still shaken by the incident that occurred on Southwest Airlines.
As you all know from meeting Nicholas personally or from reading his website, Nicholas has been in rapid decline with his Batten disease over the past few months. We were able to bring him down to Disney World this past week looking to create more memories with our family, understanding all too well how short life can be.
We cherish every moment we have with our children, as do all Batten parents (even when those moments can be tough, we know that everything is temporary).
As you may know, we had an unfortunate incident on Southwest airlines on the way back. We feel terrible for what Nicholas had to go through, but we also understand that other Batten families likely struggle with similar situations. We hope that by being open with these events, it will shed some light on what some people with disabilities encounter. No day is easy, but we try to make the best with what we are given.
God bless and Merry Christmas!
We are happy to be safe at home.
Click here to learn more about Nicholas and his journey:
Heather had some tough moments: How Southwest forced Nicholas to sit:
What a beautiful little boy….Merry Christmas from Canada
Im real sorry that you had to go thru that with Southwest. These people just dont THINK! How could they see the posotion that ypur son had to endure and sumise they made a smart decision?
I cant fathom it.
Southwest, hoping ypu do a good deed and quickly.
Merry Christmas to Nicholas and family. While this was an unpleasant experience for everyone, it really sounds like the flight attendant had the best of intentions in mind and wanted to ensure the safety of this child rather than make him or his family suffer intentional discomfort during the flight. I travel quite often with my little one and made sure that her car seat is airline certified each time we fly. As a Flight Paramedic, I know first-hand what happens to children in unapproved seats when involved in any accident. Lessons learned by all, but unfortunately at the expense of Nicholas’ comfort. I will think of this event and pray for Nicholas as I hold my little one tonight. God Bless and Merry Christmas.
I find it hard to believe that this flight attendant used any sort of common sense. YES, it is imperative that an approved child-restraint seat be used when traveling by automobile. But in the event of an air crash, would Nicholas have truly been safer in his parents’ lap than in his seat that at least allowed him to be upright? Probably not.
To Nicholas’ family: I hope you had the merriest of Christmases in spite of this ordeal! My husband and I will add Nicholas to our prayer list.
OMG Dwight…. taking the side of the flight attendant in this case? I’m speechless. Does he look comfortable to you? As a parent, you should be ashamed of yourself. Best of luck to you Nicholas and family, I hope SW sees the error of their ways in this case.
I’m not sure if the flight attendant had the best of intentions or if she/he was just being a bureocrat, following instructions without taking into account Nicola’s safety and comfort. Southwest has a reputation for making knee-jerk decisions without any type of sensitivity or even common sense. Nevertheless, I’m hoping that this lamentable experience will provide some food for thought for this company -and one that will help children with illness and/or disabilities.
In this Christmas day, I wish Nicholas and his parents a beautiful and joyful day, one filled with love and kindness, surrounded by friends and family that love them unconditionally.
May the good Lord bless you and all.
A $100,000 contribution from Southwest Airlinesmwould seem appropriate.
As the mother of two in Heaven my heart goes out to you. Southwest has been a pain in many sides over the years and it continues to decline. I wholly recommend Frontier; I fly with a special needs child (not physical) and they have gone out of their way to make the experience as pleasant as possible for all involved. Merry Christmas, and continue to love that beautiful child in that perfect way you do.
Merry Christmas. Enjoy your time with Nicholas! He is a gift from God. My son is having his first birthday party with Jesus today! My daughter is having her fifth party with Jesus! We are blessed every day knowing that they are with Jesus. We are blessed every day that we are enjoying our four other sons. God bless!
I’m so sorry for what you went through with your flight. It’s difficult enough traveling with children, and when a child has special needs, an extra degree of common sense is in order. Sounds like someone didn’t get that memo, and you suffered the consequences. It needs to be understood that often, when a person has needs that have to be met with special equipment, there is no such thing as an airline approved device, and accommodations need to be made. It’s likely that changes in policy will be made across the industry because of your ordeal, so at least perhaps it wasn’t in vain, although that’s little comfort to the parent who had to watch a child go through it. God bless you all, we wish you a safe and happy holiday.
I am so sorry for what you went through on the return flight from Disney. My hunch is that the stewardess, who is probably a nice and well-meaning person, is feeling fairly rotten right now, and wishes that she had used some common sense at the time, instead of reacting the way she did.
Please try to focus on the good memories of the trip, not the disappointing finish. God bless you and your family.
What a beautiful little boy your little Nicholas is. Your incident on the plane is unfortunate, but at the same time perhaps it is being used to propel your family and Nicholas’ disease into the public view. I hope that there is someone who is reading this who can fund your research. I had never heard of Batten disease but am now aware because of Southwest Airlines’ conduct. God uses evil for good and I hope that this incident will be used for great good to further your promise to Nicholas. Bless you!
God bless you and your family.
I am stunned after having learned your story. It is truly unfortunate that this event had occurred, but as you can see, many are behind you with support. As another woman posted, encounter your family & son’s brutal experience isn’t necessarily in vain, there is an upside to it all. As you said, your encounter has indeed shed much light on these very important controversies. Im confident to say I can speak for many as we hope to see some concrete efforts to make revisions in order to avoid another catastrophic event, such as yours. I hppe to see Southwest & other neighboringAirlines with similar rules & regulations (as obsurb as they seem) will follow through with their promise to our society.
I wish you all the love, support & comfort in this difficult & emotional time.
Dear Nicholas & Parents of Nicholas,
I read with sadness the recent episode on Southwest Airlines. Sad, in many respects and on many levels. Nicholas, I am so sorry that you had to endure the discomfort you experienced, and Mum & Dad I am saddened that ‘there is nothing ‘ as of yet to make what should have been this wonderful memorable flight for you all.
I say as of yet, because as a former Southwest Airlines Customer Service Supervisor, I certainly know that airlines ( Southwest in particular) has a heart for all passengers but especially those with different challenges. I know first hand how difficult it is to transport a child with ‘special needs’.. and as such I ‘set about’ finding out ‘why’ nothing currently exists to better transport immobile passengers, and then to ‘put into motion’ an idea that I had, that would do just that. So, after several years in the making, a huge amount of time and personal expense, I am ready to ‘remedy’ the seat situation, benefiting all passengers everywhere. It is with warmest best wishes for a brighter future,
Mandy
I was a witness to the event and it was sad because of the way the attendant and supervisor handled the situation. At first it seemed as if they wanted to work with the family but by the end, they were getting rather rude. And it would have been different had they not already flown one way using the same seat. You can’t let tem go one way and then not alloew them to return. They ride was a struggle for them and many of us felt helpless but disgusted at the final outcome and how it was handled. Coming from a family with 2 severely disabled children, I felt for the family and understand why they are trying to bring awareness to the fact that there is no reason to make things more difficult for a family that already faces many challenges. I hope Nicholas had a great Christmas and I wish you all a Happy New Year.
I am so sorry that you had that experience. Nicholas is a gift from God and is very fortunate to have such wonderful and dedicated parents. My thoughts are with you all.
I wonder if there will be some sort of “sorry” from SWA not that this story has hit the fan? Keep us posted.
I am so sorry that you all had to go through this ordeal. I wept when I saw the picture of Heather breaking down but I wept even more when I saw how little Nicolas had to lay in that seat. GOD bless you all.
So sad i will not be flying southwest anymore good bye southwest
im so sorry for what you are experiencing, he is a beautiful child.. life is great and memories of love will live forever you are my number one role model.. i dont know how you do it.. you are a strong women. keep up the good work.. have faith.
love my family ashley,marques,jermiah, and alizay
I have to write Southwest about this!
My heart goes out to you. My 10 year old son is Autistic and I know how difficult any change in routine especially traveling can be. People who do not live with this everyday don’t always realize the daily challenges and struggles parents face.Nicholas’s story brought tears to my eyes because there are still people in this world who are cruel and heartless to kids with disablities!!As parents we worry about other children bullying and being creul not ADULTS!! In this day and age, shame on the pilot and crew of your flight and the entire airline. I know that rules have to be followed but they are also made to be broken. Lighten up and listen to what a parent of a specila need kid says!! They know what they are talking about!!
Again SWA has shown their stick to the rules colors. I am a retired Paramedic and if Dwight thinks for a single minute that the flight Attendant and CSR supervisor did the right thing, you are wrong. As provider of health care you do everything you can do to make the patient comfortable and accommodate their special needs when necessary. I very sorry that Nicholas was treated that way and that is the very reason I will not travel by Southwest Airlines ever again, because several years ago I had to escort a patient with special needs and could not afford an air ambulance the family spent several days on the phone trying to find a way to get their 17 year old home to die. Well long story short, SWA said that they would take him home. The family was very excited and when we got to the gate with the young man they saw all of the equipment needed to care for him they said no he could not fly on their plane. Even though they had gotten approval from Dallas for the trip and the equipment we need to travel with him was FAA approved. Well I hope you had a very merry Christmas and I will be praying for your family. Oh as for the other patient,
Oh as for the other patient, United Flew him home First Class at no charge to the family or myself and partner round trip.
I can’t believe the Southwest flight crew. They must not have children or know anyone with special needs. Life is difficult enough and to make it more difficult for this family is so rude and heartless. Nicholas and his family deffinately didn’t deserve this. I would hope that Southwest Airlines will make a sizable donation to Our Promise to Nicholas Foundation to help to find a cure so other children won’t have to go thru this disease or crule treatment. I hope your wonderful memories of Disney with the family will help you to forget how awful Southwest Airlines was to all of you. Our prayers are always with you and you are terrific parents. Love from your cousin’s Bruce, Nancy, Wendy, Brian & Anastasia
As a working flight attendant, I surely do sympathize with children, or even adult family members who arre physically, mentally, or emotionally challenge. I personally have worked with Special Olympics, helping youngsters enjoy some social activities. Not an easy job. Holiday travel can be terribly hectic, for passengers and crew alike. The only reason I can think of that may have caused both the flight attendant AND supervisor (which in the case of handling physical disabilities would most likely have been a specially trained individual) would be that the seat posed a possible danger to other passengers in the case of an emergency. Not saying that is what it is …. I did not see the seat ….fjust a possibility. Another point here, is that at some point in a discussion with emotional parents or guardians, it is often necessary to be FIRM in order to get the plane going. Often times, FIRM is mistaken or perceived as being RUDE. Those are just my thoughts when looking at it from the airlines side of the street. I am glad that the airline made an attempt to apologize for the whole bad situation …. I thank you for sharing your story, as besides helping people to understand Battens disease …. it helps others to see the family’s trials and perhaps try to be even more sensitive to those needs.
I was Nicholas teacher when he was an infant toddler, and I know his mon, Heather who is one of the sweetest people I have had the pleasure of meeting , I saw the picture of Nicholas and I got teary. I cant believe that they would treat Nicholas like that , they are lower than dirt in my opinion. Heather keep being the great Mother that I know you are . I’ve been working in the early childhood field for twenty three years and Heather is one of my top three parent. God bless you.
I am very sadden to see what has happen to you folks, I can not believe what they did to you. Customer service should always be the number one priority no matter what. I would like to invite Nicholas to a week long baseball camp I hold each summer to raise money to benefit CHAD (children’s Hospital at Dartmouth) and other local charities, I would like to add your foundation as one of the benefiting groups from the baseball camp, please check us out on the web at http://www.ihbbaseball.org any questions feel free to contact me at any time. thank you and god bless you and your family
John I Bly
Owner-IHB Baseball
Assistant Baseball Coach
Colby-Sawyer College
5 Merlot CT Unit 2
Concord,NH 03303
email: coachbly12@comcast.net
I have a rather unique perspective of this situation. As a Certified Braillist working for students who need their materials transcribed into Large Print and Braille. Two of the children I transcribed for have Battens Disease. My perspective is different because my father was an FAA Air Traffic Controller for 40 years. In his job he trained people to become air traffic controlers, worked for the Air Force. assisted in analysis of safety reporting and more. He died at 94 years. He was well aware of regulation AND safety … I know he would have considered the needs of the special child, his passenger’s safety always was at the top of his priorities … all this and the fact that I was born with Hydrocephalus/Dandy-Walker Syndrome and my parents were told to abandon me that I would die … he and my mother, brothers and sisters kept me …
I pray for a cure … for Nicholas and thus hope for his family,
I feel very sorry for you and hope that a cure is found or additional treatment to help Nicholas.
Love to your boy, you and your family Heather. You have such a sweet family!
Good morning, I saw and read your story and it touched and angered me & my wife’s hearts. We have an 8-year old with CP and this February are going to Disney (Give Kids the World). We are excited by extremely nervous. We are is a similar situation in that my Son needs 24 hour care and can not hold himself up or stable enough. We have been fighting to figure out what seat will work on JetBlue but we can not get an answer. As you know all the Adaptive Seats are not FAA approved. This is a blessing that we have the opportunity to go to Disney but it is also a logistic nightmare just to plan how to get there. Besides having to give my son extra meds to make sure he does not get to scared or excited where he might have a seizure, but the thought when we get there and the airlines saying the seat does not work since I can not get an answer from anyone. We are sorry this happened to you and your family but look at it as a good thing that there might be an awareness for people like me in the same situation. If you have any advise or comments, please feel free to email us.
Take care and take it slow. Good people are hard to find these days and it looks like your son is being loved by some great people!!
Sincerely,
Angelo Sodano
Quinc, MA