WWW.HOPE4HARPER.COM

Please click link to be redirected to our new website for updated posts on Harper and the Howard family living with CDKL5 genetic disorder, Harper's special needs therapy progress along with CDKL5 Seizure Research!

Thank you!

THANK YOU!!

I NEED to send out a HUGE thank you to so many people who have joined together to rally around Harper and her Cause.  Your generous efforts in helping increase awareness of Harper and her project to stop seizures is greatly appreciated.  I hate to start mentioning names as I do not want to forget anyone.  But recently these companies or individuals have put forth great effort in making Harper's Florida trip not only happen but be a memorable one.

Thank you Paul and Alpha Energy Labs for letting me represent your organization at the AARST 2011 Symposium!  If you didn't still trust me enough to be a good Alpha Rep we would not have been coming here in the first place.

BIG THANK YOU TO Aunt Jonnie for flying down to Texas for two weeks to help my mom (MOE MOE) take care of Sassy Pants Lily and Fussy Bootie Harper!  Without either of you we would not have been able to go!

Jamie Woods and Linda Jacobson without you who would know her?  Thank you!

Hilton in the Walt Disney World Resort
PSAV Presentation Services
Dolly Foundation
Flyin Fur Photography

We are fans of you all!!  Thank you for assisting us this past weekend and for your continued support of Harper and her Cause.  With your help and that of many others Harper's project goals WILL be met and her seizures WILL stop!

I am sure I forgot someone and I apologize but I do appreciate you helping to make this happen and support Harper more than you will know!

Emotional Week

October 12, 2011 Harper Howard at 18 months: 

It has been a very emotional week for The Howard House!  The hardest day was Tuesday October 11th, the day before Harper turned 18 months old.  I had finally made some time to switch out the clothes for both girls.  Packing away the ones that no longer fit and digging out the ones that are the appropriate size for changing season.  Lily's was easy and I did her first without really thinking this task would become an emotionally difficult one for me!  But Harper's quickly became very difficult to complete.  I was unpacking clothes that Lily used to wear.  It is very hard to see the outfits and remember what Lily was doing when she wore them and seeing that Harper is no where close to reaching those milestones.  What made it even more emotionally challenging was reflecting on the fact that when Lily was 18 months old this is the picture we had made for our family: 

I had no idea at that happy time that in just nine short months our lives would forever be changed and we would be facing the most difficult challenge ever placed before our family.    

A friend of ours, Jamie Woods, has been working so hard to get Harper's story in media to help spread the word of her much needed seizure research project to help her become seizure free.  Jay Gormley with Channel 11 came Friday evening and filmed our family and Harper's story.  You can watch this emotionally embarrassing (for me) but really well done news cast that aired this last Tuesday and Wednesday at the following link: 

http://dfw.cbslocal.com/2011/10/11/rare-genetic-disorder-cant-take-away-carrollton-couples-hope-for-harper/

I am not sure how many of you were able to see the Today Show two weeks ago about the Handicap Dog they named Harper who was not expected to live but with intense therapy survived and is thriving.  This story can be viewed at the link bellow: 

http://today.msnbc.msn.com/id/44617504/ns/today-good_news/t/deformed-puppy-rescued-trash-learns-walk/

Now the organization, The Dolly Foundation, who is currently puppy Harper's home and rehabilitation center is located in Orlando, FL.  My husband, Dustin, and I were scheduled to travel to Orlando on a business trip leaving Friday October 14th.  Well thanks to so many people who have worked very hard over the past week the two Harper's now have an opportunity to meet!!  Being as Harper is under two and free to fly adding her to our trip was easy.  Taking her on the trip will not be as easy but very much an opportunity we do not want to miss.  So this Sunday October 16th Harper the handicap puppy surviving and thriving will meet Harper the baby at the Hilton located at the Walt Disney World Resort.  The event has been made open to any media that would like to cover the hope and love extended to both Harpers.  We look forward to meeting many caring and wonderful people that devote there time and effort to helping others animals and people alike! 

Check out our facebook and twitter page at:

www.facebook.com/hope4harper 

http://twitter.com/#!/Hope4Harper

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopreforacure

GREAT WEEKEND!!

Fabulous Event! Great turn out.  Just enough people to actually mingle and remember you met them!  Loved it!  Thank You First Presbyterian Church of Denton for the wonderful morning service and allowing Eunice the use of your facility to gain support for Harper's Cause.  A special thank you to Eunice Curry and her family for coordinating such a great event.  What a perfect day, rain and all! ;) 

Stephanie and her daughter Chloe attended the event.  Stephanie hosted a Hope4Harper garage sale Saturday and the effort from a single mother with a 16 month old baby means the world to us.  Thank you for stopping by and surrounding yourself with people you've never met and allowing me to meet your beautiful and exceptionally sweet baby Chloe who seemed to really enjoy Harper.  :)  So good to see you and meet all the wonderful folks who are supporting Harper and her Cause!!

You'll have to check out our facebook and twitter page at:

www.facebook.com/hope4harper 

http://twitter.com/#!/Hope4Harper

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopreforacure

Well this weekend was a busy one.  Harper went to cheer on her BIG SiSTER, Lily at her second soccer game of the season.  Lily did much better as did Harper!  There was no crying from either of them.  WooHoo!!  ;)  Aunt Breezy came back in town for a visit from college.  Lily loved that!!  We also went to the GREAT STATE FAIR OF TEXAS and had a super fun time on the rides and eating tons of fried food!  Poor Harper could not join us as she does not have adequate equipment to ride for long periods of time comfortably so she stayed with MoeMoe.  :(  Sunday we rested and tried to kill Lily's sever allergies and prevent them from turning into a sinus infection on us...that didn't work!  She has missed two days of school this week and a soccer practice but is getting much better.  Harper is doing a great job learning to eat solid, pureed, foods with a spoon!  We now know why you start this process very early as she has bit her check and tongue in this learning process and now proceeds very cautiously when taking bites!  We have made some medication adjustments and are as always hopeful to see some improvement soon.  

You'll have to check out our facebook and twitter page we have a few good events our there we'd love for you to join us at.  

www.facebook.com/hope4harper 

http://twitter.com/#!/Hope4Harper

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopeforacure

ENCOURAGEMENT!!

Thank you Harper for the encouragement to keep doing my very best to help you succeed.  You are PERFECT!! and I love you and your Big Sister Lily oh so VERY MUCH!!!

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopeforacure

Follow us at:

www.facebook.com/hope4harper 

http://twitter.com/#!/Hope4Harper

From the Heart....a Hard Reality to Grasp

Harper has been more peaceful since last Thursday when we added Ibuprofen to her daily medication routine.  She is now no longer crying all day long.   With all the testing we did the week prior: 24 hour Video EEG, Ultrasound, and Endoscopy, we are relieved to know that none of her major organs have issues.  

However, she is still battling seizure control.  The frequency, severity, intensity and type change frequently.  It breaks my heart every time it happens.  You can see the confusion in her face but have no way to explain to her what is happening and no explanation to comfort me while I love her through the seizure as to why this is happening to my child.  If there has ever been a time in my life when there is no since of normalcy to it this is it!  It's not just about Harper and her pain or the pain we as parents feel for her but also the pain of having to explain the concept of  Harper's life long illness to her older sister, Lily, who is only 3.  Tears of sadness and pride overcome me when I hear her play with her dolls and comfort them through a seizure or hear her tell Mrs Amy, our Yoga therapist, how to tell if Harper is having a seizure.  

The truly unfortunate reality to this whole circumstance is that Harper is not the only one suffering from these horrific seizures.  

IT'S NOW LESS THAN 100 DAYS AWAY 

This research project is an amazing blessing and an opportunity to work with World Renowned Epileptologist, Dr. Frances Jensen, and her team at The Children's Hospital of Boston, in an effort to find a way to stop seizures in CDKL5 affected children.  The project is centered around finding the reasons why when children with Epilepsy are ill their seizures can either reduce in frequency or stop altogether during illness.  This phenomenon is present in the majority of epilepsy patients and therefore, the outcome of this research project has the potential to help more than just Harper and children with CDKL5 but all those who suffer with seizures regardless of the cause.

Publish Post

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopeforacure

Follow us at:

www.facebook.com/hope4harper 

http://twitter.com/#!/Hope4Harper

Harper's 100 Days Starts.....NOW!!

GigaByte IT has graciously been assisting Hope4Harper with a new design to incorporate our new project information page. There has been a brief pause do to the generous heart of Mike Snyder, GigaByte IT.  Mike and his family have been assisting a brave solider and his family with a move requested from last minute deployment orders.  A special thanks to those who serve our nation and prayers for safe travels and returns.      

100K in 100 Days

This research project is an amazing blessing and an opportunity to work with World Renowned Epileptologist, Dr. Frances Jensen, and her team at The Children's Hospital of Boston, in an effort to find a way to stop seizures in CDKL5 affected children.  The project is centered around finding the reasons why when children with Epilepsy are ill their seizures can either reduce in frequency or stop altogether during illness.  This phenomenon is present in the majority of epilepsy patients and therefore, the outcome of this research project has the potential to help more than just Harper and children with CDKL5 but all those who suffer with seizures regardless of the cause.

For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopeforacure

Hold Please

I realize you are wondering where the website might be and I assure you it is coming and will be great!  Do to a last minute deployment of a soldier willing to serve our nation needing assistance in packing his family there is a delay.  Please pray for this soldier's safe travels and safe return and peace and comfort to his family while he is away.

Still Here!

I have not forgotten about our website fans!  We are currently working on a new page that should be up and running soon so please keep checking back.  If you want to know what's going on follow us on facebook:   www.facebook.com/hope4harper

BIG Things Are Happening!

I lift up my hands...

I am so tired!  I know it's not about me and I know I can't give up, there are two little girls who depend so much on both Dustin and I but something has to give.  This schedule is crazy and I see no end in sight....these seizures have to STOP!!

We had a productive weekend although not supper fun because we all had a little boogie nose.  Harper got it the worst.  I took her to the Doctor on Tuesday and she is sick.  Poor baby is struggling and we are doing the best we can to make her comfortable.  For those who have children, if you can go back to the days of colic, if you suffered through that then you'll understand.  That is where we are now only she is 16 months. It's been 5 days.  We don't know if it is the diet change, being sick, a phase of her disorder, or all the above.  

BIG NEWS!!!

BIG NEWS!!!  

We have $25,000 for the CDKL5 Seizure Research Project!!!  A fund is now being established and we will have a page on the Children's Hospital of Boston website sometime in September.  We only have $175K left to raise!  ($75 by December)  :)  

This research project is an amazing blessing and an opportunity to work with World Renowned Epileptologist, Dr Frances Jensen, in an effort to find a way to stop seizures in CDKL5 affected children.  The project is centered around why when the children are ill the seizures stop.  This phenomenon is present in many epilepsy patients and therefore, the outcome of this research project has the potential to help more than just Harper and children with CDKL5 but all those who suffer with seizures regardless of the cause. 

To make a tax deductible contribution to the CDKL5 Seizure Research Project please contact Jessica Miley at 857-218-3191 or jessica.miley@chtrust.org.  Be sure and check to see if your employer does company matching before making your donation.  

For more information on Dr Jensen and her work visit: 

http://www.childrenshospital.org/cfapps/research/data_admin/Site162/mainpageS162P0.html

Other News: 

Harper's medication is now at it's max dose as of Sunday.  We are seeing some changes in the seizure pattern and style.  We will know within in the next week if this medication combination will help with Harper's seizures.

We met with a Neurologist and dietitian specializing in the KetoDiet yesterday for four hours....what a wearing task that was and poor Lily was with me the entire time.  She is the best big sister.  I had know idea the appointment would last that long and she was so good!  I think we are on a good path with Harper's diet trial but it was such a struggle to get there.  Apparently there are two other children in the DFW area that have CDKL5 and I have know idea who they are.  I gave permission to the doctor to provide my information to them so they could contact me.  I posted in our facebook group with no response.  I hope we are able to get in contact with these parents.  Since, the doctor treats two patients with Harper's disorder they were less interested in listening to the issues we are experiencing with Harper and more interested in giving us the same diet the other families use and moving on.  Eventually we reached some middle ground and I am hoping we can gain a bit more seizure control with these diet modifications.  We shall see within the next 6 weeks.

"SAVIOR, He Can Move the Mountains...."

We have some exciting and very emotional news to announce!  I have briefly mentioned it in our past posts but now it's officially moving forward and we NEED you guys now more than EVER BEFORE in prayer.  

Over the last 15 months I have watched Harper have seizures multiple times a day for up to 10 minutes at a time just as other CDKL5 parents have experienced and learned to live with.  I have tracked her patterns, changed her medication, modified her diet all with very little success.  In working with the wonderful support group of parents we were able to determine  that for many of the children when they are ill their seizure activity declines or stops.  Then as their body returns to normal so do the seizures!  And there should be nothing normal about your child having seizures!! 

With this information in hand, I contact Dr Frances Jensen world renowned Epileptologist from Children's Medical Center of Boston.  Dr Jensen is the Director of Epilepsy Research, Senior Associate in Medicine and professor at Harvard Medical School.  Her research is specifically geared towards age specific seizures.  She is willing to address the questions of illness related to seizure activity specifically centered around CDKL5 disorder.  This is Fantastic News!! 

Even more phenomenal in the research world is that in her rough estimate we are looking at possibly being able to being this study as early as January 2012.  The project is estimated to take 1.5 to 2 years.  She is currently discussing with her colleagues  the specific group of experiments necessary to evaluate this relationship between illness and seizures for CDKL5 disorder patients.  

My goal with this project is to find a way to stop the seizures not necessarily cure CDKL5.   I am expecting exact project details, time line and budget in the next couple of weeks.   At which point, Hope4Harper will sign a commitment with Children's Hospital of Boston to provide the funding.   Good and Bad News surrounding this.......as of now it is estimated to cost $200K for this to happen, half of which has to be paid in 4 months!  Here's the good news.....the hospital will create a fund for Hope4Harper's project and anyone will be able to make a TAX DEDUCTIBLE DONATION to Children's Hospital of Boston and designate their donation to HOPE4HARPER"S PROJECT!! This project is currently geared toward CDKL5 patients of which there are only 300 in the world, but has the potential to help thousands of epilepsy patients in the future and with it's completion will lead us one step closer to a CURE! We are open to fundraising ideas, suggestions, assistance and please prayer!   For more information on Dr Jensen, her Laboratory, her Research or Children's Hospital of Boston please visit the following link:  http://www.childrenshospital.org/cfapps/research/data_admin/Site162/mainpageS162P0.html

Progress

Harper development is progressing nicely but slowly.  She really starting to get the hang of using a straw and gaining better truck and head control for independent sitting.  She is displaying of love for musical toys with effort from her to make them play.  She is gaining weight helping to make those muscles strong.

We are still working on control her seizures.  If this new medication combination is going to work we should see some improvement with in the next couple of weeks.  We have been led to a wonderful and exciting opportunity to work again with Dr Jensen of Harvard Medical School in Boston but this time in a research project to benefit the majority of CDKL5 patients including Harper.  We should have details ironed out within the next couple of weeks.  We are in need of prayer for direction!  This project will be expensive and we will need to find a way to generate funding but it could lead to the answer in how to stop the seizures for CDKL5 disorder patients.  This isn't a cure, but it's definitely a help and a step forward in the right direction.

All about your HEART!

"Like" Harper's page at www.facebook.com/hope4harper

Use of a Straw!

After many weeks of learning to regulate our intake through the use of our rigged up straw nipple, Harper finally learns how to suck through an actual straw!  BIG GIRL!!!  Now if she'd just hold her own cup I'd be free during feeding times! :) 

WINNER WINNER CHICKEN DINNER!!

SPECIAL THANK YOU!!!

Last night was AMAZING!!!  We are so blessed to have such loving and supportive friends and family.  This event would not have come together without you.   

Harper's Auction Fundraiser raised $8462

Holly and Tanner thank you so much for your willingness to entertain us last night with your friends.  For those of us from the city...it was awesome!  You really made the event a success!  

Mom and the Kohls Team (Barbara, Maria, Rosemary, Shelly, and Cindy)  thank you for your willingness to volunteer your evening so that IFCR could gain $500 from the Kohls Cares for Kids program.  

Dad and Melony your decorations were beautiful and made the room and thank you for helping make the location easier for our guests to find.  

Shirley and Gilbert thank you for caring for Harper and Lily over the last five weeks so we could get this event organized and pulled together.  

Deanne, Michelle, Angie, Nikki Baker, Carla, and Pat thank you for all your baking and cooking.  The refreshments were tasty!  

Laura shame on you for disclosing stories of our pageant days ;) but thank you so much for coming early and staying late.  Your help was appreciated and your coffee turned out great!  

Gwen thank you for helping get the coordination of this event organized.  

Elizabeth  thank you for your attendance and artistic ability to capture the moments during this event on film.  

Kathy and Preston thank you for your attendance and efforts in gaining awareness of Harper's condition and of her event.  The gourd you painted especially for her is beautiful and will be cherished for a lifetime.  

Thank you to all of those companies and individuals that kindly donated auction items, without you we would have only had refreshments! ;)  We also want to recognize AlphaGraphics of Carrollton for everything they have done for our family since learning about Harper and her condition.  They have been a huge advocate for Harper's Cause.  

Leslie and Maura thank you for securing the location for this event to take place and a special thanks to both of you for your help the last two days.  We would not have been able to pull this together without you. Also a big thank you to Community Life Church of McKinney, TX for allowing us to use your facility.

Again a very SPECIAL THANK YOU to all of you who attended this event!  Without you and your support it would have been a room full of stuff and food!  Your attendance is what made this event a success!  Thank you for spending your Friday evening with us!  I hope you were all able to meet Harper and her Big sister Lily.  

Finally, what everyone is wanting to know!  Who won the IPAD2? 

 Ticket Number 219017

EXCITING NEWS!

Our records and those of other CDKL5 parents indicate certain foods trigger seizures and also when our CDKL5 kids are ill they do not have seizures.  These two phenomenons are puzzling and could be a clue in helping find a cure for this devastating disorder.   Therefore, we contacted Dr Francis Jensen, a world renowned Epileptologist in Boston, to discuss the possibility of  CDKL5 research.  Specifically pertaining to food and/or illness.  She replied and is VERY interested in heading the research projects for us.  We are scheduled to talk more next week on the process and how much this project will cost.  Hope4Harper currently has $3,142.83.  This plus whatever tonight's event will bring in will be used to fund this project. HOPE...LOVE...CURE!!! Let's FIND that CURE!!!

BIG DAY!!!

This is it!! HARPER"S BIG DAY!!! TONIGHT AT 6pm at Community Life Church in McKinney, TX we will have an Auction Fundraiser for Harper.  LIVE AUCTION will start at 6:30pm and refreshments will be served.  We hope to see many of you there!

Directions:
121 to 75
take 75 North Exit #40A-Louisiana St
turn left at the street in front of the Golden Coral
go straight through the four way stop
turn right on Graves St and look for Community Life Church on your Left


LAST CHANCE: 
Tickets will be on sale at the Event but for those of you unable to attend you can purchase your IPAD2 Raffle Tickets online until 3pm today!  You do not have to be present to win.  The winning number will be posted on our website on Saturday.  GOOD LUCK!!!

THANK YOU!  
Thank you to EVERYONE who helped to make this event happen for Harper!  Your support has made a HUGE impact in her Life and the lives of others who fight this disorder everyday.  Thank you!!

If you can't make it ....

Our BIG AUCTION EVENT is THIS FRIDAY AUGUST 5th at Community Life Church in McKinney, Texas at 6pm!  We hope to see many of you there!  However, we understand that not everyone will be able to make it.  For those of you unable to attend but would still like to participate you have two options: 


1) IPAD 2 Raffle Tickets (1 for $10 and 3 for $20) are available on the right side of this web site.  


2) We have three featured vendors: 
            - "Thirty One" http://www.mythirtyone.com/GwenJ/
            - "Sew Blessed Embroidery"   http://www.sewblessedembroidery.com/ 
            - "Mary Kay" http://www.marykay.com/september/Profile.aspx 
    If you would like to place an order you may do so at the websites listed above.  

Thank you so much for your support!  It should be a fun night! :)