http://www.mynegm.com/golf/news/2723/fourth-annual-fore-nicholas-golf-tournament-set-for-saturday-june-23rd-at-stonebridge-country-club

Nicholas Represented in Boston Marathon!

Nicholas in Boston Globe

Nicholas was mentioned in the Boston Globe today in an article about the artist M-C Lamarre, who has painted nearly 100 Fenway Murals.

Here is a link to the article:  http://www.bostonglobe.com/metro/2012/04/13/new-bedford-artist-wants-paint-green-monster-murals-fenway-park-anniversary/pKRcrox0ZD4bx5BHpUq0VK/story.html

As a tribute to opening day at Fenway Park’s 100 anniversary, here are some photos of our Fenway Park for Nicholas:

THANKS to all the MOMs and our amazing community for coming out to support such a great event.

We far surpassed last year’s totals for people attended and money raised!

Click here for more web
site to Mom’s Club Easter Egg Hunt Fundraiser

SPONSORS AND ENTERTAINMENT ANNOUNCED FOR

MOMS CLUB OF BEDFORD FOURTH ANNUAL EASTER EGG HUNT

The platinum sponsor of the event this year is the host venue, NH Sportsplex, an indoor sports facility which offers 130,000 of playing surface for sports leagues and activities for children and adults including soccer, field hockey, basketball and flag football.

“It was not too long ago that Nicholas was running on our turf with our Lil Kickers soccer program, and year over year we are saddened to see the effects that Batten has had on him, “ said Michael Benton, owner of the NH Sportsplex.  “ NH Sportsplex is proud to sponsor this year’s egg hunt in Nicholas’ honor and we encourage all of our players and community partners come to the event to help him fight this terrible disease.”

“As an organization, we take extreme pride in extending our resources to a worthwhile cause such as this,” noted Laura Bloom, the Director of Service at IRA Lexus. “It is our honor to help out our local community and it is something that is at the core of our company values. We are humbled knowing our support may forge a vital step in fulfilling the pledge of Our Promise to Nicholas Foundation.”

The egg hunt will take place promptly at 10 am, when children can hunt for eggs filled mostly with candy and stickers plus a few “golden eggs” filled with special prize tickets provided by the NH Sportsplex, Ira Lexus and other local businesses.  Entertainment will include Kricky the Clown who will be making balloon hats and animals, a performance by the Sunshine Generation, demos by the NH Sportsplex and Bedford Martial Arts School, and appearances by the Easter Bunny and Manchester Monarchs mascot Max.  Face painting and air tattoos will also be available to children.  Guests can also purchase bake sale items as well as raffle tickets for themed Easter baskets and items including tickets to the Manchester Monarchs, Fisher Cats and Boston Celtics, theatre tickets, Amy Conley Music Together classes, a birthday party at My Gym Children’s Fitness Center and much more.  The NH Sportsplex is located at 68 Technology Drive in Bedford.  Tickets to the egg hunt are $5 per person with a family cap of $20 and may be purchased in cash or check at the door.

Our Promise to Nicholas Foundation

The MOMS Club of Bedford, NH,is a chapter of the non-profit International MOMS Club and offers a wide range of activities including monthly meetings, park outings, playgroups, and moms’ nights out. The chapter is also committed to service projects within the community. Interested Bedford mothers can visit http://www.momsclub.org/for more information or to join.

• Beth Tamulevich, MOMS Club of Bedford, cell 603-714-9849
• 

February 29th, 2012 is RARE DISEASE day……..

We would like to honor children with a rare disease for this month like our son Nicholas who has batten disease (LINCL).

The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge number of people – 30 million in the U.S. according to the NIH (and over 350 million worldwide.) Did you know that there are 7,000 different types of rare diseases? The amount of drug approvals for the entire rare disease community each year is extremely low – potentially only 5 or so drugs a year out of a 21 total drugs the FDA approves. To date, only 5% of rare diseases have a treatment! For 95% of rare diseases, there is not a single approved treatment.  Batten disease  is one of those 95%!

For more information about Rare Disease. Please Click here for the RARE DISEASE WEB SITE

Epidermolysis Bullosa (EB) Click here for the natinoal web site

EB is a group of diseases characterized by blister formation after minor trauma to the skin. This family of disorders, most of which are inherited, range in severity from mild to the severely disabling and life-threatening diseases of the skin. This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB.

Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. For children,  riding a bike, skating, or participating in sports is difficult because  normal activities of children causes chronic sores. Wounds may cover up to 75 percent of the  body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years. Children  with EB are often referred to as Butterfly Children because their skin is as  fragile as a butterfly’s wings.

Watch this Video: The Boy behind the bandages

Aleternating Hemiplegia of childhood (AHC) Click here for the Web site

Meet Matthew

Imagine your child

·         Was CRIPPLED by a mysterious disorder that left him paralyzed for minutes, hours, even days at a  time…the mental anguish of hearing your child say “bye-bye arm”, the physical injury you endure carrying him when he goes limp suddenly.

·         Was ROBBED of his or her childhood and future.  Instead of soccer, baseball, and karate, your child goes to OT, PT, Speech, and numerous doctor visits. Imagine hearing your child will at best barely attain an 8^th grade level education.  Instead of planning for  college & helping him shape a career, you’ll be planning for his care & doing your best to teach him basic life skills.

·         Is   IMPRISONED FOR LIFE trapped in a body that won’t work right, and a mind that won’t let him flourish, all because of a disease. How would you feel knowing  your child will be forced sooner or later to live in group homes or institutions?

I don’t have to imagine.  I am Matthew’s father.   Matthew suffers from a rare disease called  Alternating Hemiplegia of Childhood (AHC).   He was born with complications & spent the first 10 days of his life in the NICU of Rex Hospital in Raleigh, NC where we live.  The doctors originally thought he had epilepsy.  This is one of the challenges with AHC.  As there is not known root cause YET (thought researchers are VERY close), the symptoms of AHC can look like other diseases, like epilepsy or cerebral palsy.  While there are only approximately 700 cases identified in the world, there are likely thousands undiagnosed (based on 1 in a million current ratio extrapolated to world population yielding 7000, not 700)

To make matters worse, about 50% of AHC sufferers do have true epilepsy.  Matthew is one of these. In fact we almost lost him in February, 2009 to an epileptic seizure.  After that I made the decision to do whatever I could to get some answers for this extremely rare, debilitating neurological disorder.    I became President of the AHC Foundation in August, 2010.   The  AHC Foundation is funding  breakthroughs in the quest to treat & cure this devastating disorder, but funds have run out!

This Rare Disease Day, we are launching a campaign to change that!. This video will show

Watch this 3 minute video. CLICK HERE!

Friedreich’s Ataxia

National Ataxia Foundation Click here

Web site on Friedreich Ataxia Click here

What is Friedreich’s Ataxia?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich’s ataxia. Onset of symptoms can vary from childhood to adulthood.  Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression.  Late onset FA (LOFA) can occur anytime during adulthood.  FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich’s ataxia and will lead to treatments that eliminate its symptoms.

Watch this video on Ataxia

WILLIAM’S SYNDROME CLIICK HERE TO GO TO THE WEB SITE

William’s syndrome is a disease that affects one out of every 20,000 babies.  It is a genetic defect and is not curable thus those affect it will have it for life.  The disease is known for the myriad of issues that affect each person and the lifespan and quality of life is different for each individual with the disease.  The symptoms can include varying degrees of issues ranging from high blood pressure, diabetes, sensitive hearing, narrow arteries, and poor vision just to name a few.  Some experience all of these and some hardly any.

Stephanie has a severe case, but this also means she experiences the positive symptoms to a greater degree.  For example, people with William’s syndrome are extremely friendly and she is no exception!  From her years as toddler, she would explore social situations with glee often inviting herself to other people’s picnic tables or beach towels for a snack and a conversation!  Somehow animals see this love within her.  She can bring out the best in cats who fear most other people.  As an animal lover, she is excited at any opportunity that she is given to work at an animal shelter or simply just meet a friend’s pet.

The William’s Syndrome Association has been instrumental in helping us not only understand the disease, but in gathering together those affected by it to expand our knowledge, share insights, and simply be together.  While it is never easy to have a sick loved one, Stephanie has helped us all to appreciate more within our lives.  She is an inspiration in her strength, positive attitude, and love

I did not post in December because I was extremely busy getting OPTN holiday mailing out on time before Christmas. I mailed 950 letters. I like to think they are Nicholas’s fan club. I feel lucky that so many would be interested in our son and our lives. It is quite humbling to know (beyond my family) so many friends and even strangers follow us and care. Honestly it lets me know that there is a  lot of  good people in our world.

Well if you have been reading our web site all along you know we still never sit still! December whirled by like a hurricane. Stressful but also enjoyable with decorating, shopping, gift giving, holiday parties.

December ended this year with another trip down to Disney the week before Christmas.  This year my parents joined us and gave us a big hand with my boys. We stayed at a Disney resort because it is on the monirail and easy access to Magic Kingdom and Epcot.  Staying on the monarail is easy with  a wheel chair. Just walking into this resort smelled like fresh flowers and was so elegant…Chris knew Nicholas would appreciate this smell as when he was well he loved smelling the flowers when he was well

Nana and Grampy

Our days were packed but we also were not rushed. We spend time at the Magic Kingdom, Epcot and took the bus to MGM. I think Nicholas had a fantastic time. His favorite ride was the haunted house as he squealed in “Boooooo” the whole ride.  He tired easy and became overwhelmed by the noise, we took a lot of breaks, ate a lot of food and were off into the park again. Nicholas enjoyed the characters and the shows the most. He was often all smiles or his eyes appeared to be following along intently.  The trip down the Disney this time was  much more work as Nicholas needs have increased since the last visit 12 months before. Worth every minute and we continue to make memories for our family.

We did have a  incident with Nicholas safety seat on the ride home from Disney 2 days before Christmas. We were asked to take Nicholas out of his safety seat  because it did not indicate on the seat it was FAA approved. But this is the same seat we had flow down to FL with from NH and we had not had a problem.  It would be a problem not using it because Nicholas is unable to support his own body.  The safety seat was our best and safest option but we were still asked to take him out of the seat to be stowed under the plane or get off the plane.  Nicholas did have a very difficult ride on our laps. He cried most of the trip as he was very uncomfortable and it was hard to sooth him to relax. I was a nervous wreak trying to keep him hydrated and on top of giving his medications  held on my husband’s lap during the flight was not an easy task.  Most of his medications are to prevent seizures and he takes them 10 times a day. In the end like any mom of a crying baby…I ended up crying with him…. It was a stressful trip but we made it home safe and Nicholas was back to himself once we were home. We have been talking with southwest airlines about our flight and they have apologized. Our hope is that no child or adult with a disability will have to fly uncomfortable. We understand it was miscommunication and the rules are not clear for the disabled flying. We hope to make the rules clear and to get as many safety seats approved as we can for disabled children and appropriate seating for any one who has a disability.  We are working together with the airline to get this moved forward in the right direction. A positive that came out of this situation was that we did get media attention toward awareness to batten disease.

Thank you for the outpouring support for our family and Nicholas in the southwest incident.

WMUR Channel 9 We are in the news! Click here to watch

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:

Matt and Kristen reciently  got married at Disney World .Congratulations!

Watch this you tube video of Nicholas and William meeting Wally in our basement. Click here GO SOX

Nicholas at MGH getting his g-tube placed

A quick update since Nicholas g-tube was placed on August 4, 2011. He had lost nearly 10 pounds over the summer and had difficulty opening his mouth and chewing his food. It was very stressful for both Nicholas and I so Chris and I decided it was time for a feeding tube placement. It was placed at Mass General Hospital in Boston. He got through surgery with no complications. After a few weeks of only giving him formula tube feeding he gained back his weight and strength.  He was able to begin to eat by mouth again. He still can not get enough calories he needs to maintain a healthy weight.   He still needs full assistance and feeding all meals but expresses a lot of pleasure while eating (saying mmmmm). He tires easily so I still tube feed him some during the day and night to make up any calories that were missing.  All water and meds go through the g-tube which has been extremely helpful. Nicholas he is able to sit up into a sitting position using his arms and legs to get him into this position. He as not able to do this prior to the tube being placed.

Getting ready for surgery

post surgery

4 weeks later.....OPTN appreciation cookout

Nicholas with nurse Theresa

First day of 3rd grade