First, an update on Nicholas: In January we got Nicholas out to our backyard ice rink. I layered his clothes, put on his jacket, hat and gloves and then put him into a sleeping bag. Chris picked up Nicholas’s long lanky body and carried him out of the house and into the cold weather. They made their way to a sled tube waiting for Nicholas on the ice. I could see Nicholas’s eyes brighten, framed by his favorite red hat. He looked cozy and warm. He could no longer talk and had difficulty smiling, but I could see by his facial expressions that he liked it.
Chris took hold of the sled’s rope and led him on a quick spin around the rink… and I could barely belt out the words, “Oh my God Chris! Slow down… don’t go so fast!” I don’t think Chris heard a word I was saying and William, who was behind me, started to giggle as he assured me that Nicholas liked it. The mom in me always worries. Then William, covered head to toe in hockey pads wobbled out onto the ice. He yelled to me, “Mom! Look at me! Look at me! Take my picture!” This is how we started 2013.
Five years ago Nicholas entered kindergarten running full speed and this year he left fourth grade in a wheel chair, unable to make his body do all the things he loves to do. His nurses, teachers, therapists, staff and friends have watched him slowly decline with us. School gave Nicholas a purpose and a routine. It made him feel important.
This summer started a difficult time for Nicholas. His seizures increased and he had trouble with everything from feedings to sleep. We managed a family trip to Vermont and Nicholas enjoyed weekends at the pool, with Chris gliding him through the water. We went to the Boston Science museum, where Nicholas enjoyed listening to the IMAX movie on trains!
In the fall Nicholas started 5th grade, but he was only able to attend a few weeks due to an increase in seizures, which wiped him out for the day. Since then Nicholas has declined significantly. In October he started seizing every few hours. We managed his care from home with constant contact with his doctors in Boston and his local pediatrician. I am thankful to the nurses that I have at home to help me care for Nicholas because this time has been physically and emotionally exhausting. My husband and my mom have been my rocks, holding me together when I am no longer able to hold my tears back.
We tried Nicholas on various new medicines until we hit on one that worked and he could tolerate. His new medicine controls his seizures but leaves him tired. Each day we struggle to make him a little stronger, but I know Batten Disease is slowly taking him from me.
In the past few days Nicholas’s eyes have brightened. I know he is totally blind now but he seems to look into my eyes to tell me it is all going to be okay. I can see he knows he is loved by everyone who comes into contact with him. When I pull myself out of my sadness watching Nicholas experience this disease, I see around me the support we are given. Thank you!
We are grateful for our family, friends and community who encourage us to continue to fundraise. Thank you to those who have come to our fundraisers, personally donated, and volunteered to help our cause. Thanks also to the businesses who sponsor our fundraisers, including two new events this year. It all matters and we are humbled by the generosity we have been given. Please consider chooosing Our Promise to Nicholas Foundation as your charity to donate to this year. With your support we are getting there, one step at a time closer to curing Batten Disease.
Fundraisers for 2013- Thank you for your support!
5th Annual Easter Egg Hunt –The Bedford Mom’s club hosted, raising roughly $15,000.
5th Annual Fore! Nicholas Golf Tournament- We had nearly 120 golfers and raised $20,000.
Not So Scary Halloween Party- This new event raised $7,000.
1st Annual John Tanner Memorial 5 K Run- This race was in memory of our beloved friend who ran marathons for Nicholas over the past 5 years. John passed away unexpectedly in March and we miss him with all our hearts.
Here is where your money goes:
We are planning our second scientific conference in Bethesda, Maryland in the spring of 2014. This will be a scientific workshop, inviting researchers from around the world who are experts in Batten Disease, or who have expertise that can lend support to the research efforts. Along with other family foundations we will grant money, raised due to your generosity, for scientific endeavors that will further the goal of curing this terrible disease.
UPCOMING FUNDRAISERS 2014-
Sunday March 9, 2014 Zumbathon hosted by Amy Ogden and the McKelvie CAT Team. Location: McKelvie Gym 1-4PM Bedford NH. This event is for participants who are 18 years or older. Younger participants may attend but will need a waver signed by an parent. Tickets for this event are $15.00 before the event or $20.00 at the door. For more information please contact Amy Ogden Ogdena@sau25.net or Ginny Toland Tolandg@sau25.net
April 12, 2014 6th Annual Easter Egg Hunt NH Sportsplex; Bedford, NH
June 21, 2014 6th Annual Fore! Nicholas Golf Tournament Stonebridge Country Club, Goffstown, NH
October 25, 2014 Not So Scary Halloween Party Saturday; NH Sportsplex; Bedford, NH
October 4, 2014 2nd Annual John Tanner Memorial 5K Run Russell’s Garden Center, Wayland, MA.