Thank you Chris Elms for coming to Dallas! (http://specialneedschildren-chriselms.blog/)spot.com) We enjoyed our 4 days of intense therapy and it couldn’t have come at a better time for Harper!
There are 291 days until the end of the year but ONLY 28 DAYS UNTIL HARPER TURNS 2!! For most parents the first birthday is a monumental event that is celebrated with everyone. For Lily our house was overloaded with friends and family. Lily’s piece of cake was everywhere but in her mouth and by the end of the day we had over 300 pictures and a very exhausted one year old. For Harper that event was put on hold. We, as a family of four, took her out to a cupcake store with a candle and a camera. Now it’s time to give her what she missed out on….
Birthday Chick Fila Days will be celebrated on April 12 all day in the following locations:
- Lubbock, TX (South Plains Crossing on Slide Road) and
- Plano, TX (6408 West Plano Parkway)
***REMEMBER TO LEAVE YOUR RECIEPT FOR HOPE4HARPER and a percentage of your celebratory meal will be contributed to Harper’s Cause.***
Erica, founder and president of The Dolly Foundation, has coordinated an Online Birthday Auction April 12 through April 15th to help Hope4Harper raise the remaining funds needed to complete the Seizure Research Project with The Children’s Hospital of Boston. The Dolly Foundation is a pit bull rescue organization that took the on responsibility of a dying puppy they choose to name Harper. Check out the connection of the two Harpers in an update from TODAY.com: http://animaltracks.today.msnbc.msn.com/_news/2012/03/08/10613823-harper-the-once-deformed-puppy-is-doing-great-and-doing-lots-of-good-too
From Erica’s kind and giving heart we were led to Manda, founder of Loss Angeless Clothing an organization that clothes needy children with a new shirt through the purchase of a uniquely designed shirt from their website. Loss Angeless Clothing has designed a special Hope4Harper Shirt you can purchase from their website www.LossAngelessClothing.com. Your purchase will clothe a child in need AND contribute $10 to Harper’s Cause. You can pre-order your shirt today because you will want it to wear during Harper’s Birthday Month of April. Post us a picture of you showing your support!
Over the past 11 months, with the help of many people, we have desperately searched for someone willing to evaluate Harper’s rare condition from a unique perspective, a metabolic perspective. During this time we have experienced many disheartening occurrences, as well as, many successful pieces of information provided which will help in assembling this complicated CDKL5 puzzle. Through our investigations, for the purpose of finding a way to help stop Harper’s seizures, we have made some very enlightening realizations.
Life is simple, we as in people are what it make it complicated.
We are all called for one purpose which we all fulfill in unique ways. “The American Dream” rooted in the rights written in our Declaration of Independence for Life, Liberty and the pursuit of happiness elude to the freedom of prosperity through opportunity. In chasing this dream of so called prosperity, which we have misinterpreted to mean monetary wealth, we have made many beneficial breakthroughs while at the same time made many life threatening decisions some of which will not reveal themselves to us as such for some time.
In our efforts to seek out the best help for Harper we have seen several specialists, each of which study their particular area of the body independently of all other areas. Although, in some cases this proves to be helpful the reality is our body functions as a whole being and therefore in complicated situations such as Harper’s the answer lies in looking at the entire functioning system.
In our attempt to find someone to help with this effort we have found that this disconnect we are seeing in the medical community is replicated from the disconnect we have in our society. Each of us see the government, food, financial, medical and insurance industries and such as operating independently from one another. In actuality, everyone is interconnected and until you being to dive into research of each part to save your child’s life you would probably live the rest of your life completely unaware of this. And what does it all relate back too…this misinterpreted pursuit of prosperity.
Do we ride bikes, grow our food, and live by candlelight when the sun goes down? We are not expected to move backwards nor would we want to. We are called to move forward and learn from this knowledge we now possess.
It’s about togetherness! Just as the cure for the CDKL5 seizures lies in the ability to look at the body function as a whole we to must remember we are one body and in order to function effectively we must work together. This concept is a rarity in the non profit community as each organization attempts to persuade their cause. However, for Hope4Harper, which will be non profit as of April 1st 2012, the hearts those who have contributed in various ways to help get Harper and her Cause where it is today is what triggered our filling for that non profit corporation. It’s not about the money…it’s about awareness of the Cause!