Gabrielle is Walking!!

Gabrielle continues to have 1-5 seizures per day. She is waking throughout the night lately which may also be seizure related. The medications do not seem to be helping. Johns Hopkins called today and they don’t feel Gabrielle is a particularly good candidate for the diet. They could schedule us to come in July if we are interested in giving it a try but said that children with cortical dysplasia generally benefit most from surgery. We are trying to figure out our next step. Please continue to pray for wisdom and direction.

The good news is, despite all of these seizures, Gabrielle seems to have gotten a better handle on walking. She had a good day Monday and was walking all over the place! Just wanted to share the following video so you can see the progress for yourselves.


  1. Hello!

    My name is Julia Williams. I am the mother of Alexander Williams. My husband showed me the email you sent and I suddenly realized what a small world this is. I have actually heard of you through Briana Thrift at my older son’s preschool. Last time we had talked was around Christmas and I understood that Gabrielle was doing better. I am so sorry for the rollar coaster that you are riding upon.

    Sadly, we have spent a good portion of time upon that same rollar coaster. It does appear that our stories are a bit different in that Alex presented with seizures shortly after birth and the diagnosis of right frontal lobe focal cortical dysplasia with catastrophic epilepsy ensued at 5 weeks of age. It was at that time that we were transferred to Duke for a surgical opinion. I am a nurse at the WakeMed Childrens ED and felt very fortunate to have one of the doctors that I work with do some research for us while we were in the midst of turmoil. She spoke with a friend of hers who had trained under Dr. Derek Bruce whose niche is cortical dysplasia. He is well known for his work and travels the world to educate others. At the time, we were not getting quality care at Duke and were often getting conflicting information and opinions that served to confuse rather than clarify what was the best thing to do for Alex. He was then almost 7 weeks old and seizing up to 50 times per day by my count alone despite 4 seizure medications and repeated doses of ativan throughout the day. I spoke personally with Dr. Bruce via phone and he agreed to give a second opinion on Alex after we had overnighted all of his MRI, CT, PET, and EEG data. We had his opinion the next day and he answered all my questions with a weight-lifting clarity. The decision was finally easy and we had him medically flighted to Washington D.C. childrens hospital. He had a craniotomy with right frontal resection done at 7 weeks of age. The area of his cortical dysplasia was 5mm from the motor strip therefore he does have left sided weakness as a result. He has been in physical and occupational therapy since he was 6 months old.

    He went 8 months without any seizures and was actually off all meds when he started to have seizures again. With his first surgery they did prepare us for the possibility that he would need further surgery as they did not want to remove more brain tissue than what was necessary. In April 2006 he underwent his second surgery in which they resected the edges of the area they had removed before. He has now been seizure free for 23 months and is outgrowing his seizure medication dosage. We feel very blessed to have Alexander in our lives and for all of the progress he has made.

    Alex just started walking unaided in 8/2007 and pushed away his walker for good in 11/2007. He just turned 3 in January and aged out of the early intervention program. He is now attending a special education preschool at Vandora Springs. He is most recently making great progress with his speech and seems to be learning 1-2 new words each week which has been a God-send as it has been very frustrating for the past 8 or so months where it seemed that we not only did not make any progress speech wise, but actually seemed to lose some words.

    He is out to prove all of the doctors wrong! We were told that his left hand would be the most affected area and that it would probably only amount to a “helper hand.” This was very believable as until the beginning of January he mostly kept it fisted and showed very little purposeful opening of it. Then suddenly he started to open and attempt to use it! We still have a long road ahead of us, but with each day comes new blessings!

    My prayers are with you and your beautiful Gabrielle as you travel your journey. If there is anything that we can do for you, please do not hesitate to let me know. And, yes, we do live very close, so, if you ever need an ear or a shoulder, I am certainly here. I remember just how alone and lost I felt when everything was at its’ peak and there was no one around that I knew of that could understand. God certainly works in mysterious ways and maybe this contact might in some way help Gabrielle.

    I will be out of town this week, but look forward to hearing from you and learning more about your beautiful angel.

    All my best,

    Julia Williams

  2. Kelly O'Melia says:


    Thank you for your very informative response. I am glad to hear Alexander is making so much progress.
    I am amazed how similar Alexander’s dysplasia sounds to Gabrielle’s. Her dysplasia is also very near the motor strip. I am wondering if you would recommend Dr. Bruce? We would like to get a second opinion before proceeding with a second surgery. There is definitely discussion about how much tissue to remove and how aggressive to be this time with the resection.

    Thanks so much for your time!

    Thanks for

  3. Hey Kelly,

    I am sorry that I did not post that Dr. Bruce had retired from D.C. He has attempted to retire in the past without much success as he is often sought after. I would definitely recommend him as well as Dr. Yaun who trained under him and who assisted in both of Alexander’s surgeries. I don’t know if this would help much, but I do have his personal cell number and have heard of people who have contacted him at home and gotten a second opinion/evaluation. (the problem being before that he was often traveling overseas) If you are able to contact him, it might be worthwhile to see if he would be willing to look at a copy of all of the data you are preparing for Dr. Weiner and possibly give an opinion. I know that he was working out of another hospital in California I believe and may still moonlight there at times. I can also offer up that I might be able to contact Dr. Yaun on your behalf and see if she is still in close contact with Dr. Bruce or if she would be willing to look at the data herself. Please let me know what I can do to help. These are people that I truly feel are God’s angels and were able to turn on a light for us in a world that had been filled with darkness. We not only trusted them once, but twice in the matter of removing portions of our son’s brain. If nothing else, maybe they could serve as a third opinion for you possibly without having to travel to be seen (he did it for us and offered up names of others who would do the same. I later learned that while what the neurosurgeons really needed to look at was the scans and eeg data and not necessarily the child, they can only bill if they actually see the child)

    I continue to pray for you and your family and wish you nothing but the best.


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