We also did take a take a trip to Story Land in North Conway NH in the last spring and also stayed at a hotel with a water park. Nicholas still loved that roller coaster and water log ride. He was all smiles and yelled “again again again”. He loved the water park. It was a little more difficult for Chris and I to get him up to the top of the water slide. We did but had to carry his 58lb body up 4 flights of stairs. They yell of excitement was worth our struggle! It was a fun short weekend vacation which created great memories for all of us!
We also spent some time at Lake Winnipesaukee with his other aunts, uncles and cousins! Being with family is what Nicholas loves best! I can’t believe that Nicholas will be entering into the 3rd grade in the fall! Time Flies!
Smores at the Camp
Heather, thank you for the update on Nicholas. My heart breaks for your family. I know this is a really difficult time for you. I have no words, but know that you have a lot of people in our community that love you and wNt to help any way we can. We love you guys. The moooneys
Heather - I just finished reading the update on Nicholas and the tears will not stop. I keep up-to-date with his progress on FB and can't express enough how brave this little boy is and what a wonderful family he has to support him. My heart breaks for your family but know that many think of you and pray for a cure for this terrible disease. I wish that I knew you personally, only know you from my daughter, so that I could be more support to you and your family. I will keep you all in my prayers. The Patutos
My heart is also breaking for your whole family. It seems like you really cherish the good moments you have with N, and I hope that those continue for as long as possible. Best wishes.
P.S. any way the foundation can accept pay pal donations?
Hello Heather and Chris, Have just been reading the updates on Nicholas and your family, Im sure this week was a tough one for you all, thankyou so much for updating the website, your writing is so brave and full of love, I admire your spirit, and never ending work for Battens Disease, Nicholas is so surrounded by love, you have a wonderful family ,I send you my love and friendship as you keep moving forward, Best wishes to you..Bev Mason
No words can express the saddness we all feel - but grateful at the same time for the family all coming together to support each other. Heather & Chris (and William) you are amazing people who are doing an amazing job. God give us what we are "suppose" to handle. We may not always like it, but there is a reason. Nicholas' reason is you! I love and have you close in my arms always. XXX cousin Nancy!
Hi Heather, I wanted to write and say hello from Australia. I am mum to Matilda, age nearly 5 who was recently diagnosed with Battens. Thank you for your blog which is beautifully written. It inspired me to write about our own journey, such as it is. It sounds like Nicholas is surrounded by an amazing and loving family. He looks just lovely. All the very best to you and your family. Laura xo
Dear Heather, Chris, Nicholas and William, love and best wishes to all of you. We are going to do a special class Sept. 24 at Music Together of Milford and will send you the donation. You are all an inspiration of love, kindness and strength. Amy