Fact, if all the people that went and watched the new Twilight movie would donate their movie ticket money, we would be well over our goal. Twilight the movie supposively is causing seizures. Our baby and many others have them without going to a movie theater.
If you were going to spend your Friday watching the new Twilight movie, share your movie ticket with Harper and donate to her cause so we can stop her seizures and those of many others suffering with epilepsy.
You have heard about Lily’s life and Harper’s life, what about mine and Dustin’s? Well we have not been to a movie theater since the end of 2007 just before Lily was born. After Lily was born every friday night was movie night at home. Since Harper’s birth I think I have seen less than a handful of movies. Dustin on the other hand has seen many just not all the way through since he tends to fall asleep in the middle of them. I am at least honest enough with myself to know it won’t happen so I am going to bed…poor Dustin! 🙂
Dustin and I did not choose to become parents expecting it would be easy. Granted we did not expect it to be this challenging either. However, we consider ourselves to be extremely blessed in so many ways. There are lessons in everything in life and this is one that although hard to grasp and understand we will get through together.
That is our number one blessing….we are together! So many marriages have fallen apart for various reasons kids, special needs or not, being one of them. To us all kids have special needs. Lily is very routine and has adjustment issues. Harper is a beautiful baby who’s body does not function at the level her mind understands and has to battle daily seizures. My life is challenging but even if Harper did not have her condition I would still consider it a challenge to raise two children. Lily and I had playdates; Harper and I have assisted ones called therapy.
Thankfully we have a wonderfully supportive and local network of family that makes everything we do and have done with our children possible. The reality of Harper’s situation has also been difficult for our parents to come to terms with. They have prayed, cried, loved and helped care for our children just as much as we have.
Harper was a surprise to this family in so many ways and we will all forever be thankful that she is a part of our lives. We have learned to prioritize our lives appropriately and treasure the special moments that matter rather than focus on the obvious milestones on a chart.
As I am sure everyone is aware by now we are seeking funding for a special Seizure Research Project with Dr Jensen and her lab at Children’s Hospital of Boston that will impact the future of not just Harper and others who suffer with CDKL5 disorder but for Epilepsy as a whole. The project is set to start this January at a cost of $200K half of which is due in 28 days!
We have so many people to thank for helping us. Your time and effort in helping to ensure this project happens and taking on the Cause as your own is appreciated beyond words. We pray that the value of your contributions of not just finances but time, material and support and prayers be returned to you doubled. This has been an extremely humbling experience for our entire family.
We are still working hard to raise the remaining 33,931.90 within the next 28 days for this project to begin. If the money is not made on time the project will have to be put on hold until another opening is available form the lab. Awareness is crucial!
Hope4Harper has two main events happening right now:
First: if prior to December 15th you will follow our twitter, “Like” our facebook page or if you already do those refer your friends to do so, as well as, make a contribution of any amount to the project and complete the official form located here: https://www.hope4harper.com/event/be-kindle-to-harper you can be entered in our Kindle Giveaway.
Second: CiCi’s Pizza has agreed to donate a percentage of profits made starting Monday December 5th through Thursday December 8th as long as your receipt is placed in the Hope4Harper donation bucket at the counter.
So if you are eating this week visit CiCi’s Pizza located at Forest and Web Chapel or if you need a Christmas gift for you or someone else enter the Be Kindle to Harper Giveaway. With your continued prayer and support I know Harper will reach her goals both financially and physically!
