Harper, my love:
This is it, today is your big day! You are now 2 years old! Mommy and Daddy are so proud of your strength and all you have accomplished this year. When you turned one we had just found out about your CDKL5 diagnosis and with the help of friends started Hope4Harper. Originally it was designed to help pay for your growing medical care but over this last year it has become a non profit organization designed to help provide HOPE to not only you but all who suffer with CDKL5 or similar disorders. It’s immediate focus is to find a way to STOP CDKL5 SEIZURES! Our vision is that someday you will stand behind this organization and continue it’s mission to MAKE HOPE REAL!
Your first 7 months as a one year old you were standing with the exercise ball and lifting your head, rolling from your back to your tummy bringing your legs underneath your body in an effort to crawl, sitting beside me on the sofa with very little support, eating from a spoon and drinking from a straw. Your seizures were mild at 2 to 3 per day and you were sleeping through the night.
In an effort to help eliminate your daily seizures we changed your diet and all physical ability was lost. For that I am sorry! Your mental understandings seems to have been protected despite the extremely severe seizures you developed. In your last 5 months as a one year old we have focused more on trying to regain control over your seizures to decrease their length, severity and frequency. Three days ago you received some relief and your seizures are better now than they were when you turned one.
Your lesson from this year is to make sure your decisions are lead by God and understand that even if they are the outcome from those decisions may not always meet your desire. Be at peace with the outcome knowing you made the correct decision and for that you will be blessed. With each year that passes remember to recognize those who have led you to where you are today and be thankful!
TODAY’S BIRTHDAY ACTIVITIES ARE FOR EVERYONE!!!
Starting today until April 15th visit http://www.facebook.com/dollysfoundation for HARPER’S ONLINE BIRTHDAY AUCTION, hosted by DOLLY’S FOUNDATION!! There is some awesome stuff…you won’t want to miss out and all proceeds go to Hope4Harper to Help Stop the Seizures!
AND
We will be celebrating Harper’s birthday with Chick-fila Spirit Days at 3 various locations.
- Carrollton– at Old Denton and George Bush,
- Plano– at Plano Parkway and Park,
- Lubbock– South Plains Crossing.
If you eat at the designated Chick-fila‘s and leave your receipt, Hope4Harper, will receive a percentage of the profits from today. Harper herself will be celebrating from 11am to 12:30pm at the Carrollton location and again from 5pm to 8pm at the Plano location. She will be passing out cake and goodies to all who attend.
Please celebrate with us and wear your Hope4Harper shirt in support of her Cause. If you don’t have a shirt please visit www.LossAngelessClothing.com and get yours today!
You can follow Harper and her Cause by: signing up for email updates on her website, www.hope4harper.com, via her social media sites at www.facebook.com/hope4harper, www.twitter.com/hope4harper, and www.pinterest.com/hope4harper. Thank you for your support!