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Blog
Our journey with Harper was full of adventure, difficult decisions, and exciting possibilities. Please use the search bar to type in a word of the experience you are searching for such as, CBD, Organ Donation, Eye Gaze, GTube, etc…. If you are unable to find information please feel free to contact us directly and we will help you in any way we can.
Harper Featured During CDKL5 Awareness Month – June 27, 2013
“Harper likes toys with lights, instrumental music, shiny beads and the wind in her hair. Harper has taught us about patience, communication and love! Patience we thought we had but realized we didn’t. Communication we thought we knew but now know it’s more than just words. Love we thought we felt and understood but now […]
CDKL5 VACATION
ALL PACKED http://youtu.be/qFLjuj-l_fE I wish it were that easy! Planning for this vacation took months, packing took 2 weeks! Paying for it….we’ll worry about that when when we get back! ;P Just Kidding Seriously, when dealing with kids, as some of you may know, it’s a chore to take them with you and it’s […]
Today in My CDKL5 Life
5:00 am: alarm goes off 5:27 am: I actually get out of bed Make coffee, shower, get dressed, make Lily’s breakfast, Harper’s breakfast, pull Lily’s allergy meds, pull Harper’s meds for the day…she has a shoebox full, no lie! In the midst of the above morning routine, at 6am I wake up Lily who does not […]
SACRIFICES 4 CDKL5
LAST DAY HOARDING 4 HOPE GARAGE SALE IF YOU SEE IT, TAKE IT…LEAVE A DONATION OF ANY AMOUNT AT THE DOOR! This event was one of our standard three for the year to raise money for awareness of Epilepsy and CDKL5 as well as to fund CDKL5 Seizure Research. JUNE is CDKL5 AWARENESS MONTH SO […]
Uniting Our CDKL5 Families During June: CDKL5 Awareness Month
Families all over Texas, the United States, and Internationally are coming together and proclaiming June as CDKL5 Awareness Month. Hope4Harper Kicks off CDKL5 Awareness Month with the Annual Hoarding 4 Hope Garage Sale Today and tomorrow the Hoarding 4 Hope sale continues in Carrollton. Come by our donated store space and show your support by volunteering or […]
Not Just Raising Money for Seizure Research…We are Raising HOPE
Harper’s 2nd Hoarding 4 Hope Fundraiser: Less Than 1 Week Away The space that has been donated by the Weitzman Group for our Hoarding 4 Hope Garage Sale Fundraiser is full of various items…the signs are up on the windows and ready to be placed all over the Josey Ln/PGBT intersection. We hope you are […]
How Can My Non-Ambulatory and Non-Verbal Child Communicate with the World?
Harper’s BIGGEST struggle, aside from daily seizures, is Communication. Imagine with me if you will that you are unable to move unless someone moves you. Now lets combine that with an inability to speak. How would you be able to communicate your needs or desires to someone without being able to move or talk. Take a […]
Hoarding 4 Hope Flyer is Here – Donations and Awareness NEEDED! Click & Print & Post
INTENSE CDKL5 Intensives Therapy
“Stage 1: I do, you watch, Stage 2: We do together, Stage 3: You do, I applaud!” ~Wayne Cordeiro THERAPIES UPON THERAPIES…Possible with a Willing and Helpful Family These last two months have been beyond intense, not only for Harper but also for her entire family; grandparents and aunts included!! We are so blessed that we […]
Uncontrolled Seizures and Brain Surgery
What is life like without a frontal lobe? The story I shared a link to the other day on Harper’s Facebook page has left me with the need to speak to several thoughts on the connection between Epilepsy, uncontrolled seizures, and the removing the brain’s frontal lobe (frontal lobectomy). Then, what does that solution mean […]