Comments for

Comment on Upcoming events by Amy Conley

Amy Conley — Mon, 26 Mar 2012 02:50:58 +0000

Dear Heather and Chris,
I am sorry to be missing the Egg Hunt this year. Give the boys a big hug for me! love, Amy

Comment on About Batten Disease by Becky Palmer

Becky Palmer — Fri, 23 Mar 2012 15:39:52 +0000

I am hoping someone can give us some answers. My granddaughter, Hannah, was dignosed this year about two months before her 7th birthday with Batten Disease. She is in school but her vision is going at a rapid pase. She likes school but the school system is telling my daughter she is too disruptive to have in classes anymore. It is affecting her sibling, Paige, who is two years older than Hannah. Is there some support groups out there for famlies who are also dealing with this terrible disease? Any help would be appreciated.
Thank you so very much.

Comment on Upcoming events by Bedford Martial Arts Academy

Bedford Martial Arts Academy — Wed, 07 Mar 2012 21:06:20 +0000

Bedford Martial Arts Academy will be there. We are looking forward to this great event!

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,