Comments for

Comment on A Tribute to Rare Diseases by Linda

Linda — Thu, 09 Feb 2012 04:06:44 +0000

It was a pleasure meeting the two of you tonight in Waltham. I am so touched by your love and strength that you have for your son and I hope that they are able to find a cure for your son and many others affected by this rare disease. I am hoping to attend one of your fundraising events.

Best of luck in 2012!

Linda

Comment on Holiday Letter 2011 by James Stauber

James Stauber — Wed, 25 Jan 2012 02:40:07 +0000

We are praying for Nicholas

Comment on Southwest incident by Angelo Sodano

Angelo Sodano — Fri, 13 Jan 2012 16:26:10 +0000

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

Comment on Southwest incident by sharon murray

sharon murray — Wed, 04 Jan 2012 23:13:50 +0000

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.

Comment on Southwest incident by Toby

Toby — Mon, 02 Jan 2012 18:36:46 +0000

Love to your boy, you and your family Heather. You have such a sweet family!

Comment on Southwest incident by M. C. Anderson

M. C. Anderson — Sat, 31 Dec 2011 17:46:18 +0000

I feel very sorry for you and hope that a cure is found or additional treatment to help Nicholas.

Comment on Southwest incident by Deborah Friederichs

Deborah Friederichs — Fri, 30 Dec 2011 23:51:23 +0000

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,

Comment on Southwest incident by John

John — Wed, 28 Dec 2011 05:39:50 +0000

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

Comment on Southwest incident by Sally

Sally — Tue, 27 Dec 2011 22:53:47 +0000

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.

Comment on Southwest incident by Nancy

Nancy — Tue, 27 Dec 2011 22:42:11 +0000

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