Today this photo came up on my FB page to post. I have a love + hate for this photo. When I remember the time it was taken. There was the sting of Nicholas’ rapid decline in his health. Today there is not a day that goes by that I would love to wrap my arms around my boy and keep him with me forever. That would be selfish of me to keep him hear on earth and struggle being so ill. I had to let him go free in peace and I never have any regret the time we had with him. I think about what our family and friends went through with us over that 6 year time. Providing more love and support than I have ever felt in my life. This gift I will forever be thankful in our darkest moments they were by our side.
This week we go to the BDSRA – Family support conference in Pittsburg, PA and volunteer to help with the many affected kids in the care room. With your help, support and donations we were able to support 9 nurses to help us take care of the children at this conference. This gives the parents or caregivers time to learn more about Batten Disease, learn about the trials that are available, equipment needed, services that will be needed and the most valuable is to be in contact with other parents of children going through the same struggles. Our Promise to Nicholas is proud to be part of this support and provide respite that these families need. We were also able to sponsor one family with a child with Batten Disease to attend this family support conference. The expenses these children needs are so high and often causes a financial burden and huge stress for the families.
Our Promise to Nicholas Foundation- is proud to continue our promise to help in the Batten Community which includes family support and scientific advancement.
Check back soon for many photos of the kids at the conference July 6-July 9, 2017 in Pittsburg, PA