All I can say is I wish her and her family the best. I feel nervous just reading the story so I could not imagine how her and the family must be feeling right now. May god be with her!

We have a soon to be 23 year old son who had a complete anatomical right hemispherectomy back in 1987. It was done at UCLA and he was 2 at the time. It was done to help control seizures and it did help. Chris walks, talks and gets around fine in spite of being totally blind on the left side of each eye (side effect of surgery) and being hemiplegic. If we had to make the choice again, we would not hesitate to opt again for the surgery.
Chris is diagnosed today with cerebral palsy and epilepsy. He still has seizures but not nearly as often as he did.

I hope this family will watch the fact based movie “First Do No Harm” related to seizures before going through with the surgery and/or contact Johns Hopkins about the ketogenic diet. I do wish this young girl and her family the greatest healing possible.

http://www.neuro.jhmi.edu/epilepsy/keto.html

Please keep us posted on her surgery date so we can keep her and her family in prayer

That little girl, her family and the doctors are in my prayers for a sucessful operation and speedy recovery.

Two words: Second Opinion

Or Chemical intrevention

I just want to say that i 2 have suffered a brain issue, I have had 2 anyersums 1 on the right and 1 on the left…Pray trust and believe and she will be ok stay encouraging to her show her lots of love just never take away her independence and she will be a fighter because she will know she has to do it for herself be there for her but dont be her for her..My prayers are sent up for the victory for her and full recovery keep us informed of her well being….

My niece had this same surgery done in January of 2007 at the age of 7 to also combat Rasmussens syndrome and she is doing absolutely incredible. It was pure torture what she endured in the months leading up to the surgery experiencing between 50 and sometimes up to 100 seizures a day. Now with the exception of having to relearn how to use her left side she is the same awesome little girl. The human body is an amazing thing. God knew what he was doing when he created us.

May God bless this sweet little girl and her family. I pray that the surgery will be smooth and that she will make a swift recovery.

I know a little girl in california that has the same disease and I don’t see her getting put on Fox.com for her disabilities. She has already had half of her brain removed and the disease progressed to her other side.

God Speed!

Poor baby…she deserves to go anywhere, anytime she wants within the next few months. That goes for any child whose life may be very limited in the near future.

My son was an inpatient, in Baltimore, with a little girl who had a hemispherectomy for seizures. She did wonderfully. When children have this surgery at such a young age, the remaining half of their brain sometimes takes over and they are left with very little deficit. Many prayers and much luck to this family.

Well being from Texas, even with half a brain she should still be smarter than most of her neighbors!

Please look up Glyconutrient and Mannatech. HOPE, HEALTH. You might be amazed.

I just finished the book “Gifted Hands” about Ben Carson, pediatric neurosurgeon at Johns Hopkins in Baltimore. Everyone should read this book especially any child in junior high and above. We are so blessed to walk among giants like Ben Carson. I’m sure he and his team will be doing the surgery and they are the best!!!

I hope FOX News asks Dr. Katrina Firlik to comment on this case. One of only 200 female neurosurgeons in the country, she is quite good at explaining in understandable terms the workings of the brain and what the surgery will entail. Prayers for this little girl and her family.

May Papa Dios be with this little girl and her family.

Much prayer to our precious 6 year old. Glyconutrients are a much read for Todays Parents. Thank you all our love and Prayers

May God bless this child and her family. I hope and pray that all goes well. It makes me thank God every day for my healthy neices and nephew.
Cathy

I wish the girl and her family a successful outcome. Bless you all.

Gary and I are her grandparents in Cheyenne, WY. We have one correction to make. She has not had this since birth. This began with her first seizure August, 2007, shortly after receiving the chicken pox vacination for starting school.

Go to hallzoo.com; click on Jessie’s blog. Start at the bottom and there is an excellent account of her struggle with this disease and finding the final diagnosis in Feb, 2008. Cris has stories, medical, and pictures throughout, in hopes of helping other families, some time down the road, be able to identify or to remain vigilant in seeking the correct diagnosis for their child.

My prayers are with the family

Good Luck!

It might be a rough road ahead,
but just know that you are in our thoughts and prayers
as you make your recovery - such a brave little girl
with a very supportive and brave family…

God Bless this little girl and her family.

May God bless this little girl, her parents and her entire medical staff.

God Bless Jessie and her family. I can only imagine what they will be going through with this process.

My daughter was diagnosed with Rasmussen’s in ‘06. She too had an anatomical hemispherectomy in 07. She is now seizure free. We had wonderful doctors and it stopped the disease and we pray that is never returns. We went through MANY seizure meds. and optional treatments. It was a nightmare that never stopped. Having hundreds of seizures a day and the atrophy to the brain quickly robs a child of their identity and life.

At least she can live a normal life in Texas.

Sorry to hear about Jessie’s condition & upcoming surgery. Glad to know Jessie & her family are going to Disney World. I live in Florida, but we haven’t been there yet. Have heard great things about Disney World, so I’m sure Jessie will love it. God bless you, Jessie, & we all will be pulling for you during your surgery. Enjoy your trip in Florida & Mickey & Minnie Mouse & all the other characters!! Pat Walters, Florida

Since the surgery will be at Johns Hopkins in Baltimore then obviously Dr. Ben Carson will be involved in her case. She cannot be in better hands. Dr. Carson is a pioneer in hemispherectomies and indeed has “gifted hands”. I have personally met Dr. Carson and have never been so impressed with an individual as I have with him. He is a very humble man dedicated to his field. You won’t find a better pediatric neurosurgeon. I wish Jessie God speed and a full recovery and at her age the body will adjust quickly. Enjoy Disney World Jessie!

She’ll be in my prayers.

I will be praying for Jessie’s recovery. Thank God for the wonderful doctors & nurses who help in these surgeries. I have also had a crash course in neurology recently. I empathize with you trying to wrap your head around the details of such events.
Recently, dear friends of ours had a newborn baby that was born Jan. 30, 2008 with Tuberous Sclerosis Complex - with several brain & heart tumors . She had the beginning of a hemispherctomy at one week old here in Houston at Children’s Memorial Hermann Hospital. By two weeks old, she had had brain surgery over three days: over 25 hours of brain surgeries. The doctor proceeded with caution due to her size. She had another surgery, hopefully her last, on Friday, April 4. She has recovered beautifully. Her doctor’s goal was for her to walk & talk and we are so overwhelming positive that she will. As her mom emailed all of us & the prayer chain emails swirled across cyberspace, we heard so many uplifting stories of childrens’ recoveries. May you be lifted up by all the thoughts, well-wishes, & prayers as well.
May Jessie & your family be blessed with the best surgical & physical therapy outcomes possible for Rasmussen’s. May Jessie continue to walk, talk, & have the best life ever possible.
Have a wonderful, memory-maker trip to DisneyWorld.
Bless Y’all,
Nancy Gentry

HAS ANYONE CONSIDERED THIS POOR GIRL’S QUALITY OF LIFE?

Our son had a hemispherectomy in January of 2001 at Miami Children’s Hospital. He was 10-1/2 at the time (considered “old” to have the surgery). He has been seizure-free since that day and anti-seizure drug-free since April 2002. He can’t drive because of the loss of half the field of vision in each eye (due to the surgery) and will always have only limited use of his right hand, but he is far better off than he was before the surgery. We praise God for giving his doctors the ability and courage to perform this surgery. We pray for such a happy outcome for this little girl.

Many of us will be contacting prayer chains with several churches praying for Jessie Hall.
This is certainly much for her to be going through at her young age. We wish her the best
and would also like to know how we can send her our good wishes. May God bless and be with her through all of this.

My thoughts and prayers will be with this beautiful little girl and her family. May God bless the hands of the surgeon and nurses and everyone else involved with the surgeon so she will come through with flying colors and experience a total healing.

You are in my prayers also your family may God be with you Jessie!

Wow, I am amazed right now. First of all may God be with her & her family through this time of anguish… I feel that God will place on the hearts of her parents who Im sure know her and love her most of anyone else on the earth - would not make a decision they feel would negatively affect their baby… because no matter how old she becomes, she will always be their baby. At times it is also important that to everything there is a season, and all things do happen for a reason.

My thoughts are with your family as this is a time that is dark for you all. Being a new mother with a child only four and a half months old I can only imagine what this is like for you to deal with but I wanted to say remember that god is with you every step of the way and he has your little girl in his hands. Keep up your hope and never lose faith cause no matter what goes on during this time of your lives god is always there for you. I wish you happiness and send best wishes to your family

You have my thoughts and prayers with you this day, may all go well and bless you, one and all.

How sad! I hope she pulls through without complications. I am an RN and I had no idea that the loss of half of the brain would only cause temporary paralysis of the opposite side. I was under the impression that it would cause perminent opposite side paralysis. Neuro is a complex subject! I sincerely hope that she makes it through this and that she is able to live a happy life after surgery without any additional complications. My heart goes out to her and her family.

My prayers are with you & your family Jessie.

That is all that medical science has to offer - take out half her brain but make it better by sending her to Disneyworld. When they could take her to Bethel Churck in Redding CA where she would be healed, as so many others have been, and never need that surgery. God is good and Jesus still heals. What happens at Redding is more amazing than Disneyworld, and more real too.

I can not grasp what i just read about this little girl!Please tell there is a “GOD”. DID HE MAKE A MISTAKE WHEN HE CREATED THIS PRECIOUS LITTLE ONE ??? PLEASE SOMEONE GIVE ME SOMETHING TO HOLD ONTO !!!!!”GOD” GRANT PEACE TO HER AND HER MOM AND DAD! I JUST CAN NOT IMAGINE~~~~~

First off, my Daughter is 6 yrs old and is praying for you Jessie.
She believes in the power of prayer and so do we!
I hope your family will pray the whole time she is in surgery, if you don’t believe in God maybe this is your turning point!! Jessie will wake up from this and have a recovery time that is long and hard but with all of you helping her she will do fine. Kids are amazing and as parents we will do anything to make there life easier, even if it’s only a little easier.
Luck will not have a hand in this. God with have both hands.
Love the Ulrich family Stafford, Connecticut USA

This story was forwarded to me by my uncle. I have a 2 year old daughter, Kyleigh Rochelle Evans, who has been experiencing seizures since June of 2007. These seizures cause partial paralysis in the left side of her body affecting mostly the left leg and foot. (Which means the activity is on the right side of the brain). She has undergone multiple tests which include; MRI, Spinal Tap & EEG. On 12/26/2007 she started experiencing grand mol seizures which only affected the left side of her body. Increased medication was not controlling her seizures. The neurologist decided to send us to the Texas Children’s Hospital in Houston for a second opinion. He told me we were looking at Rasmussen’s Encephalitis or Cortical Dysplasia. We are to go back for an extended stay for further testing in 2 months. I have listed my email address in hopes that you will contact me. I am a single parent and it would help if I could talk to someone else who has gone/is going through this. My thoughts and prayers are with you and your baby girl. I can understand the frustrations of the unknown as I am there. I also believe there is hope. It is unfortunate that our daughters are going through this but there may be something along this journey that furthers research to help children in the future who become victims to this horrible progressive disease.

De De : HAS ANYONE CONSIDERED THIS POOR GIRL’S QUALITY OF LIFE?

Her quality of life is precisely WHY they are having the surgery done. Without it, she would have no chance. This surgery will give her the chance to live and be happy. She may not be able to do everything a “normal” 6yr old does…but she will do her best and accomplish great things. This surgery is her life saver. Granted…things will be hard at first. Therapy always is but her parents are very involved and will be there for her. She has a good network of support.

My son had the same surgery as I stated before. He played Challenger Little league Ball, has roller skated with help and bowl. He has a job and works part time and takes great pride in his work. He will be 23 in two weeks.

Jessie too, has great potential.

So to answer your question…YES…they have considered her quality of life and have opted to help improve it. This surgery is not done lightly. It takes many Doctors and counselors to prepare the family and to get the surgery approved.

Thank you for the update, Nancy. I, too, along with all of these great people will be praying for Jessie. What a brave and sweet little girl! And what a wonderful age to be living in when these unbelievable procedures can take place. I’m in awe. I will be praying for the hands of the surgeons to be steady and sure. It sounds like Jessie will be in the care of outstanding people.

Love to Jessie and her family and to you, Nancy and Gary

Debbie

please lord god help this child & this family.

Looks like a Democrat/liberal in the making

Our daughter had this surgery three years ago. She is doing beautifully. The people who leave messages talking about ketogenic diet and other options probably do not understand this disease. There is no other option. Today, my daughter is in a regular kindergarten classroom, limps a little bit, moves her left arm in large motions. She rides a bike, swims on swimteam, participates in soccer and dance. We don’t allow anything to slow her down. She still has 20/20 vision, but does have a vision field cut. It also doesn’t seem to be an issue.

It is the longest day of your life, but the payoff in the end of having your child resting peacefully without the endless seizures is priceless. Everyday after the surgery becomes about increasing her ability, not watching her deteriorate.

There are many families that have this issue, and we do offer support to newer families. I’ll double check to see if you are in our group. You are not alone.

Best of luck, and the Dawson family will be praying for you.

Kelly

This disease cannot be fixed by diet or meds. Meds. are a temporary fix and a time buyer until families can come to terms with this disease. It happens quickly and without notice, the seizures just start and usually don’t stop! My daughter was perfectly healthy and in the middle of one January night she began having seizures and they didn’t stop until the surgery the next Jan!

The quality of life is why we have this surgery for our children. It isn’t something that you take lightly. You are “handicapping” your child for the rest of their life, but it is to save their life! By the time surgery is approaching, you usually don’t have “your child”. Children regress beyond belief. Our mature happy-go-lucky 7 year old was acting like a 4 year old, was trying to write in 3 inch letters, couldn’t remember what she had just done, was living on seizure meds (which create a whole other set of issues), and making the hospital her second home (EEGs, MRIs, Lumbar Taps, experiemental meds, induced comas to calm the brain, just to name a few). There is NO WAY to describe what you are witnessing until you live this nightmare.

There are children that have had this surgery from RS in college, having families, getting jobs, swimming, running, driving, being productive members of our society. The most amazing aspect, THEY HAVE GREAT ATTITUDES and they’re happy! These children are again AMAZING and the brain is amazing. With tons of therapy (OT,PT, Speech, Vision), love, support, and dedication…our children will make it! I feel so blessed to have my daughter.

I just wanted you to be aware that not only is there a child in Texas having hemispherectomy, but we have one in North Carolina scheduled for the same surgery for April 16th at Duke.

His name is Noah Warrick and he is only 8 yrs. old.
His parents are:
Brian and Laura Warrick
Rose Hill, NC 28458

They can use all the support they can get right now and would greatly appreciate any acknowledgement you could give them on your news page and/or TV to let people about this rare disease and the families it affects.

His family would be grateful for your prayers and thoughts during this time. They just got back from Disney where Make A Wish Fondation just sent the family. This was Noah’s second wish. His first was to be able to spend more time with his brother and they told him they couldn’t promise that to him. He also wanted to know when his doctor explained the surgery to him a couple of weeks ago if he would know his mother. Needless to say the whole family lost it then.

Cathy,

We met Noah this past week at Give Kids the World. He is an awesome kid and my kids enjoyed playing with him. My kids are so used to Jessie’s twitching, that it didn’t even bother them. The just had a good time playing and being kids.

We also enjoyed talking with Laura and Brian. It was comforting to find someone else dealing with this horrible disease. We were so grateful for them sharing their stories and listening to ours.

As I write this, I know that Noah is in Surgery at Duke, and I pray for him, Laura, Brian, and Sam. I pray for the surgeons, and all of their family and friends in NC. This affects all of them.

No parent should have to make a decision like this, but we know that Jessie and Noah and everyone involved will finally find peace.

God Bless,

Cris (Jessie’s Dad)

I am Noah Warrick’s mom from Rose Hill, NC. As I read these comments tonight I am sitting in a hospital room at Duke with Noah, who had a right hemi Wed, April 16th, only 5 days ago.

In late June of 2007 Noah started having simple partial seizures. These gradually progressed to the entire left side of his face and in Jan of this year to his left hand and arm. By date of surgery he was unable to use his left hand, had limited range of motion in the left arm, and was barely understood when he spoke due to the contsant ( and I mean 24 hours a day) twitching in his left face and arm. He could barely remember how to write his name and had trouble finding the right words to express what he wanted.

Rasmussen’s encephalitis, in just 10 months, altered his personality, behavior, cognitive and artistic ablities. No amount of meds, therapies, diets, etc. halted this devastating disease. Our only hope to improve quality of life for these kids is a hemispherectomy.

The evening his surgery was complete Noah had no twitching. He has had no seizures. He is himself again, his sense of humor shining through that very day when he told the CT scan tech his table was “hard as a rock”. I have commented to several people that it was amazing but after brain surgery he looked better than he had in months.

I share Noah’s story so that others who struggle to make this decision know that it is the right one, no matter how difficult. Noah finally has a chance at a good quality of life without seizures.

Also, to those who posted negatively, please educate yourself on this disease. These kids and their families spend hours in prayer for a better way; I’m sure all the parents would have chosen differently if there was another option. For our kids there is no other option if we want our kids to have quality of life. They don’t have many good moments, and if anything or anyplace can put a smile on their face, Disney can.

To Jessie Hall, to Cameron Mott, to all Rasmussen’s kids, to all hemi kids, to my sweet Noah:

You amaze us all with your strength, your great attitudes, your courage and your determination. God bless you all!