Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

A Beautiful Face of Hope

This is the story of our beautiful baby girl Joscelyn Grace.

After marrying and blending our families in 2008, my husband Michael and I were eager to have a child together. We were so excited when we found out that I was expecting! Because I was 40 years of age, I was considered “high risk” and underwent a lot of prenatal exams, testing and ultrasounds. Thankfully, everything indicated that we were going to have a healthy baby.

Joscelyn Grace was born via c-section on May 19, 2011. The delivery was uncomplicated. All seemed well until July of 2011 when Joscelyn had her first seizure.

I rushed her to the ER and she was transferred to the local children’s hospital. An EEG was performed and the results were normal. The doctors began looking at Sandifer‘s Syndrome as a possible explanation for her seizure-like episodes. An Upper GI was ordered and showed reflux. We were sent home with a diagnosis of Sandifer’s Syndrome, a prescription for Zantac and orders to follow up with our pediatrician.

Joss continued to seize on and off for several months. We began seeing a gastroenterologist, who prescribed Prevacid in addition to the Zantac in order to stop the reflux that we believed were causing her seizure-like episodes.  Sometimes the medicine would appear to work and the seizures would stop for days or even weeks but they always returned. It was heartbreaking to watch our little girl stiffen, ball up and cry out in pain. Her episodes left her exhausted for hours afterwards. She began to fall behind her peers developmentally and by 11 months of age was still not sitting up for more than a minute unattended, was not crawling and wasn’t walking.

On April 28, 2012, Joscelyn had a very bad seizure episode and her lips turned blue for the first time. Even though we’d already had an EEG done and the results were normal, I decided to have her checked out by a neurologist again. This time, the EEG came back “extremely abnormal”. A follow-up MRI showed hemimegalencephaly. Joscelyn’s brain was malformed and was larger on one side than the other. This rare condition often results in epilepsy. Doctors determined that Joss’ seizures were coming from her malformed left hemisphere.

In many cases, epilepsy can be controlled via medication but the seizures that stem from hemimegalencephaly are often intractable and don’t respond well to anti-seizure drugs. In these cases, doctors often recommend a radical surgery called a hemispherectomy: a procedure in which the damaged half of the brain is removed and the connections between the two brain hemispheres are severed. Removing the “bad brain” allows the “good brain” to grow normally and to take over many of the functions of the missing half.

While we have not yet decided to have the doctors perform a hemispherectomy on Joscelyn’s brain, we are in the process of learning more about this procedure and are also researching other treatment options. We welcome your comments, questions and personal stories of any experience you may have had with hemimegalencephaly or hemispherectomy.

Joscelyn’s journey is just beginning.

Update: We have decided to go forward with Joscelyn’s surgery. You can read more about our decision here: Facing the Unthinkable


66 responses to “A Beautiful Face of Hope

  1. Tina Miller says:

    Praying for you and yours Jen. ❤

  2. Lynn Beacher says:

    Sending you our prayers & support!

  3. Debbie says:

    I love you guys!!!- Debbie

  4. Marlene Buchel says:

    Jennifer,
    Your New Jersey family is praying for your precious baby.

  5. Nicole says:

    I know of a little guy who had a hemispherectomy and is doing great! The remaining brain has taken over many functions and he does well. He can run and play and is really blossoming. Prayers for your family for this decision.

  6. Steph says:

    Praying, praying, praying for you and your family. Constantly in my thoughts and heart.

  7. simplytrece says:

    Already have you all on my prayer list.

  8. joss is beautiful , praying for all of you!!!!

  9. The Cancer Alliance of Marion County says:

    To The Dempsey Family…
    Joscelyn is so beautiful and those sparkling eyes and that bright smile show how whole her spirit is!

    I will forward this to members of The Cancer Alliance and request they forward to any and all who may have answers.

  10. HI Joscelyn,

    You’re one of the bravest kids I know, and I don’t even know you yet! No matter what you’re feeling, just know the world is sending you lots of hugs.

    From, your friend in Canada.

  11. While I have no experience or words of wisdom to share with you, I do share my prayers for your family.

  12. Katie says:

    What a gorgeous little girl! Kind thoughts and prayers for your family.

  13. While I can’t offer any advice or answers, I wish you and your family all the best in this difficult time. Joscelyn is beautiful and looks like a vibrant and happy baby. My thoughts are with you!

  14. tjzmommy says:

    I have been in your shoes with my own son. I hope this surgery brings some new inspiration of all the things that Joscelyn will do in her sweet life!

  15. Connie says:

    Joscelyn & all her Family in our prayers and and the prayers of many others in Indiana, Oregon, Texas, Iowa. Love to All, Great Grandma Metzger, Terry , Connie, Jay, Tina, Kaelin & Kyler

  16. Jenn Henson says:

    You, your beautiful daughter, your son Nick and the rest of your courageous family are in my thoughts and prayers. I told people today that although I have not met you yet, Jen – you carry a piece of my heart with you each day – although you may not know it. And – my enormous Orlando family is spreading the word so that thoughts and prayers will be mutiplying in abundance. So much love to you!!!

    • Thank you SO much, Jenn! It’s amazing and humbling to hear how many people are thinking and praying for us daily! We are blessed to have you walking alongside of us on this journey!

  17. laura mccoy says:

    Oh my goodness, I can’t even begin to imagine what its like for u, joss, and the rest of your fam. My deepest thoughts and prayers go out to you. To have a successful journey thru this triumph and a happy ending to it all!! My love to u all.

  18. Dawn Leon says:

    Wow, it’s hard for me to come up with words. My payer are with you and your family while making this very difficult decision. I hope God leads you to the right decision for your beautiful daughter.

  19. Susan Noble says:

    She is BEAUTIFUL such an AMAZING gift and blessing! Offering many many prayers for your Sweet baby girl:)

  20. Louisa Noble Drury says:

    Thank you so much for sharing this. My thoughts and prayers are with you and Joscelyn and your whole family. Nicole’s comment about a little guy who had a hemispherectomy and is doing well is most encouraging. — Love, Louisa Noble Drury, Stowe, Vermont

  21. Louisa Noble Drury says:

    See above

  22. Janet says:

    Added to my prayer list !! God is good and we shall praise Him in this storm, I believe He does wonders !!!

  23. Laura says:

    I found out through work about Joscelyn and as a mother of 5 (three of my own and two stepchildren) I cannot even begin to imagine what your family is feeling. In the only way I know to help, I gave blood today (I’m O+) for you beautiful little girl, and as much as I will pray that she doesn’t need it and everything goes well, I’m happy to know that if she does, it is available to her. Good luck, and God Bless!

  24. Nita says:

    I am praying for Joscelyn and your family as you go through this difficult time. God is with your precious little girl and has wonderful plans for her and your family. I have donated blood for Joscelyn and will be in continue prayer for her and your family.

  25. sam says:

    I and my family are praying for Joscelyn and your family. Especially today.

  26. harvey simmons says:

    My family and my church family will keep this beautiful child in our prayers.

  27. Susan Young says:

    Hi, Jennifer, I just read your story in the Sentinel and want to introduce myself – I’m on the board of directors for the Epilepsy Foundation of Florida and have seen other children after this type of surgery, with wonderful results. Your daughter’s age is so much in her favor. When our daughter, Alison, was 11, she experienced a stroke as a result of an AVM bursting in her right frontal lobe. The emergency surgeries over the next couple of months caused scarring in that area, resulting in epilepsy. Her seizures are controlled with meds but recently she had a followup MRI (she’s now 28) and seeing her brain after all those years was shocking. Most of her right frontal lobe is just gone as a result of dying cells after the aneurysm burst. You’d never know it, however, as she ran cross country and track in high school and received a bachelor’s degree from UCF. Our situation is different but we are alike in that our children have faced, and are facing, such incredible challenges and our hearts break for them. I’m hoping you have the same success that we have seen over the years as part of the Epilepsy Foundation, and if you ever need help or just someone to talk to, please contact us…susandyoung@hotmail.com. Stay strong! Susan Young

    • Thank you so much for sharing your daughter’s encouraging story with me, Susan! It’s stories like these that give us hope when we are fearful of what the future may hold for our little girl. I look forward to speaking with you in the future! Gratefully, Jennifer

  28. Lisa Willis Holmer says:

    Hi, my son had surgery in the same unit a few months ago for a brain tumor. We are absolutely blessed to have these services in our community! I am so happy for you and your daughter! May God continue to bless you all.

    • We are SO grateful for the doctors, staff and technology here at Florida Hospital for Children! They are wonderful! I hope your son is feeling much better! Blessings on you and your precious family as well!

  29. Cynthia Berfect-Shelby says:

    There is no problem or ailment to big for God to handle. I will keep you and your beautiful bundle of joy in my prayers!

  30. Michele Garrett says:

    My daughter Makenzie also had this life changing surgery. I am so happy to hear that Joscelyn is doing awesome!! I work at the hospital and had the privledge of scanning her after one of her surgeries (MRI). She is beautiful, and I have said many prayers for her since the evening I met her.

  31. catherine carraro says:

    I continue to pray for precious Joscelyn. You were both such a huge inspiration to me while my son was at the hospital for his veeg for the week. He has the internal grid placement this month and hopefully surgery. You probably don’t remember but I thank God for introducing us that day and for your encouraging words. Blessings!

    • I’m SO glad to hear that we were able to offer some encouragement to you, Catherine! You and your precious little boy are in my prayers! Please keep me posted on how he is doing! Hugs!

  32. Terry Bridie says:

    No mother or father should ever have to watch a child suffer. Unfortunately, our medical system has programmed us to believe that drugs and surgery are the answer. In 1992, I was diagnosed with Stage 4 cancer. My ex husband canceled my insurance which turned out to be a huge blessing. It opened the doors for me to seek alternative medicine. I never went for chemo or radiation and 20 years late I am doing quite well. Thank the Good Lord. God’s people perish for lack of knowledge.
    I say these words not to create judgment but hope. Before I would let a surgeon put another knife to my child, I would seek alternatives. I would be glad to recommend someone in Lake Mary. Dr. Dan of Elevation 360. It doesn’t cost anything to get another opinion. I have a book that I would like to give you that he wrote. It will open your mind to a whole new world of hope for your daughter.
    We are taught to trust people because they have degrees. Most doctors really do want to help their patients but the money is in surgery and drugs not homeopathic practices. It has been a huge controversary but the results on our side are unbelievable. Dr. Dan offers 100% money back guarantee if they can’t help you in 180 days or less. Does your doctor make that offer? In 12 years, they have helped over 24,000 people in their clinic and only refunded one person and that was due to a strange illness that they took a chance with.

    May God Bless you and your family.
    Respectfully, Terry Bridie

    • Thank you, Terry. Unfortunately, were Dr. Dan not be able to suppress Joscelyn’s seizure activity within 180 days, by the time we got our refund, she may have lost her ability to speak, as well as other cognitive and motor functions. Regarding your statement that, “Before I would let a surgeon put another knife to my child, I would seek alternatives” I think that you would be amazed what you would consider when faced with the prospect of your child never walking, talking or even being able to recognize you if you didn’t. I’m happy that alternative medicine worked for you and wish you continued good health and blessings.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: