cropped-mickies-logo.png

Kristie on our Contributor:

Nicole Gantz Murray serves as the Director of Development for The Brain Recovery Project, a non-profit organization dedicated to helping children reach their full potential after brain surgery to stop seizures. Her youngest son, Ronan, underwent a functional hemispherectomy at the age of 10 months at the Children’s Hospital of Philadelphia to stop his intractable epilepsy. Nicole lives in Philadelphia with her husband, Jonathan, and Ronan’s big brother and best friend, seven-year-old Declan.

Fate intervened this past September while I attended the Global Genes Summit in Irvine, CA. I was pouring myself some coffee to fuel the long day ahead and chatting with someone in line. I shared, “I am here because my daughter, Mickie, is a living miracle. They removed her parietal, occipital and temporal lobe of the left hemisphere of her brain for epilepsy. Now she’s seizure free!” The words were still leaving my lips when I heard a gasp from behind me and turned to see a beautiful woman with a big, bright smile. She said, “Me too! My son had a hemispherectomy for epilepsy.” Nothing could connect me faster to another human being. We had both walked the walk. She knew the despair, fear and devastation that still scarred my mama-bear heart. She understood the helplessness and then the answered prayer. Our babies’ precious, little brains had survived the unthinkable, all before the age of one. And we were here, driven to help the families behind us. The admiration I have for her is immeasurable. I asked her to share her story here, as an offering of hope and inspiration to our kindred families still in the fight.

Ronan was born with a rare brain malformation, discovered shortly after birth when he began having seizures at less than a month old. The prognosis given by the doctors was grim. Due to the early and aggressive seizures, they informed us – “he may never walk, he most certainly will have trouble communicating, and he may never lead an independent life.” It was devastating news to hear and absorb as we held our perfect newborn baby.

At three months old, in addition to the partial seizures he was having daily, Ronan also developed Infantile Spasms, a catastrophic and devastating form of pediatric epilepsy. Some days Ronan would have 30-60+ seizures. After trying and failing six different anti-seizure medications, Ronan’s team recommended hemispherectomy surgery to disconnect and remove most of the left side of his brain. On October 23rd, 2013 at only 10 months of age, Ronan had a left hemispherectomy at Children’s Hospital of Philadelphia. Making the decision to remove half of your baby’s brain is not a decision any parent would ever want to face. Though the surgery often saves a child’s life, and it certainly saved Ronan’s, it also comes with side effects and lifelong complications and challenges a child must overcome or manage. Removing half of a child’s brain leaves them with hemiparesis, a weakness of the opposite side of the body and very little functional use of the affected hand. Additionally, there can be auditory, visual, sensory, and other learning and behavioral challenges as well as ongoing orthopedic issues that must be managed.

Ronan turns five on Friday and is going on four years of seizure freedom. He jumps, runs, sings, and relentlessly teases his big brother. He can recognize most of his shapes, most numbers, and is working hard on recognizing the letters and sounds in the alphabet — all things that typical pre-school children are working on at his age. He has an incredibly sharp memory and just revealed to us that he knows the entire Pledge of Allegiance and the lyrics to God Bless America (both of which he learned at school). His journey is not without challenge. Ronan does struggle with many bi-manual tasks and fine motor tasks. We also expect that, due to his visual and auditory impairments, reading and learning in a typical classroom (i.e., noisy!) may be difficult but not impossible. Ronan continually demonstrates an endless ability to learn and adapt. As his parents, we are committed to ensuring he has what he needs to thrive. I am so honored to be his mommy and excited to see what he does next!

By Nicole Gantz Murray

212 Responses

  1. My son is 5 years old. He suffered from myoclonic seizure for over a year, uncontrollably with meds. When he has one it starts where he rolls his eyes back or his eyes are staring off to nowhere, seeing he arms jerk every single night His breathing gets very shallow and his heart rate speeds up, now his not sleeping. I don’t think there’s any changing he started experiencing one horrible serious side effect of the medicine. I could not get an appointment with a neurologist for 5 weeks. I was filled with worry. Thank God for a wonderful doctor, i read a testimonial of someone on a website her daughter was cure from seizure using herbal medicine. I called the number that was retain at the website, i explain to doctor Lawson about my son symptom and I ordered his medicine. my son used the medicine for month now, his health has change the meds worked without any trace of side effects. For over 1 year now seizure free if you don’t have this herbal product it is available. It works, wonderfully. Call him at (979) 475-5130 or email dr.lawson52@ gmail. com. I’m so grateful that he was able to SURVIVE it

  2. Blog and article sites offer freelance writers an excellent opportunity to showcase their talent and expand their portfolio. Many writers use these platforms as a stepping stone to secure more significant writing opportunities or even turn blogging into a full-fledged career.

  3. What’s Happening i’m new to this, I stumbled upon this
    I have discovered It absolutely helpful and it has helped me out
    loads. I am hoping to contribute & assist other
    users like its helped me. Good job.

  4. I’m very happy to find this page. I want to to thank you for ones time due to this fantastic read!! I definitely liked every part of it and I have you book marked to see new stuff on your blog.

  5. Howdy! This blog post could not be written much better! Looking through this article reminds me of my previous roommate! He constantly kept talking about this. I’ll send this article to him. Fairly certain he’s going to have a very good read. I appreciate you for sharing!

  6. You really make it seem so easy with your presentation but I
    find this topic to be really something which I think I would never understand.
    It seems too complex and extremely broad for me. I’m looking forward for
    your next post, I’ll try to get the hang of it!

  7. naturally like your web-site however you have to take a look at the spelling on quite a
    few of your posts. Many of them are rife with spelling problems
    and I in finding it very troublesome to tell the truth then again I will certainly come again again.

  8. you’re in point of fact a good webmaster. The website loading pace is amazing.
    It sort of feels that you are doing any unique trick. Also, The
    contents are masterpiece. you’ve performed a wonderful activity on this subject!

  9. Hi there to every one, the contents present at this website are genuinely remarkable for people knowledge, well, keep up the nice work
    fellows.

  10. Does your site have a contact page? I’m having problems locating it but, I’d like to send you an e-mail.
    I’ve got some creative ideas for your blog you might be interested in hearing.
    Either way, great site and I look forward to seeing it grow
    over time.

  11. Hey I know this is off topic but I was wondering
    if you knew of any widgets I could add to my blog that automatically tweet my newest twitter updates.

    I’ve been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience
    with something like this. Please let me know if you run into anything.
    I truly enjoy reading your blog and I look forward to your new updates.

  12. It is the best time to make some plans for the future and it’s time
    to be happy. I have read this post and if I could I wish to suggest
    you some interesting things or tips. Maybe you could write next articles referring to
    this article. I want to read even more things about it!

  13. Hello would you mind stating which blog platform you’re using?
    I’m going to start my own blog soon but I’m having a difficult time deciding between BlogEngine/Wordpress/B2evolution and
    Drupal. The reason I ask is because your layout seems different
    then most blogs and I’m looking for something unique.
    P.S Apologies for getting off-topic but I had to ask!

  14. Spot on with this write-up, I really feel this web site needs much more attention. I’ll probably be returning to see more, thanks for the information!

  15. Hello very cool web site!! Man .. Excellent .. Amazing ..
    I’ll bookmark your website and take the feeds also?
    I am satisfied to find numerous useful information here in the post,
    we want develop extra techniques in this regard, thanks
    for sharing. . . . . .

  16. Thanks a lot for sharing this with all folks you really
    recognize what you are talking about! Bookmarked. Kindly also talk over with
    my web site =). We may have a link alternate arrangement among us

  17. Hello there, I discovered your site by means of Google even as
    looking for a related topic, your website came up, it seems good.
    I have bookmarked it in my google bookmarks.
    Hi there, simply changed into alert to your weblog via Google, and located that it’s
    truly informative. I am going to be careful
    for brussels. I will appreciate for those who continue this in future.

    Lots of other folks can be benefited from your writing.

    Cheers!

  18. Thanks for your personal marvelous posting! I truly enjoyed reading it, you are a great author.I will remember to bookmark your blog and may come back down the
    road. I want to encourage you to ultimately continue your
    great posts, have a nice weekend!

  19. hello!,I like your writing so a lot! share we keep up a correspondence extra about your article on AOL?
    I require a specialist on this house to solve my problem.

    May be that’s you! Looking forward to look you.

  20. I know this if off topic but I’m looking into starting my own blog and was wondering what all is needed to
    get set up? I’m assuming having a blog like yours would cost a pretty penny?
    I’m not very internet smart so I’m not 100% certain.
    Any tips or advice would be greatly appreciated. Appreciate it

  21. Undeniably believe that which you stated. Your favorite justification seemed to
    be on the net the simplest thing to be aware of. I say to you, I definitely
    get annoyed while people consider worries that they just don’t know about.
    You managed to hit the nail upon the top and also defined out the whole thing without having
    side-effects , people can take a signal. Will probably be
    back to get more. Thanks

  22. When I initially commented I clicked the “Notify me when new comments are added” checkbox and now each time a comment is added I get four emails with the same comment.
    Is there any way you can remove me from that service?
    Cheers!

  23. Hi there! This is my 1st comment here so I
    just wanted to give a quick shout out and tell you I genuinely enjoy reading your blog posts.
    Can you recommend any other blogs/websites/forums
    that cover the same subjects? Appreciate it!

  24. Good day! I simply want to give you a big thumbs up for your great information you’ve got here
    on this post. I am coming back to your blog for more
    soon.

  25. Yesterday, while I was at work, my sister stole my apple ipad and tested to see if it can survive a thirty foot drop, just so
    she can be a youtube sensation. My apple ipad is now destroyed and she
    has 83 views. I know this is totally off topic but I had to share it with someone!

  26. Hi there, i read your blog occasionally and i own a similar one and i was just wondering if you get a lot of spam comments?
    If so how do you prevent it, any plugin or anything you can recommend?

    I get so much lately it’s driving me crazy so
    any assistance is very much appreciated.

  27. Great blog here! Also your website loads up very fast!

    What host are you using? Can I get your affiliate link to your host?
    I wish my web site loaded up as quickly as yours lol

  28. Remarkable things here. I’m very satisfied to see
    your post. Thank you a lot and I’m looking ahead to touch you.

    Will you please drop me a mail?

  29. You really make it seem so easy with your presentation but I find this topic to
    be really something which I think I would never understand.
    It seems too complex and extremely broad for me. I’m looking
    forward for your next post, I’ll try to get the hang of it!

  30. Thanks for the good writeup. It in truth used to
    be a amusement account it. Look complex to far introduced
    agreeable from you! By the way, how can we keep up a correspondence?

  31. Great goods from you, man. I’ve be aware your stuff
    prior to and you’re simply extremely fantastic. I actually
    like what you have got right here, really like what you are stating
    and the way in which by which you say it. You make it entertaining and you continue to take care of to stay it wise.
    I cant wait to read much more from you. That is really a terrific web site.

  32. Heya i’m for the first time here. I came across this board and I find It truly useful
    & it helped me out much. I hope to give something back
    and help others like you aided me.

  33. I like the helpful info you supply to your articles.
    I’ll bookmark your blog and take a look at again here regularly.
    I’m fairly certain I will be told many new stuff proper right
    here! Good luck for the following!

  34. Wow that was odd. I just wrote an extremely long comment but after I
    clicked submit my comment didn’t show up. Grrrr…
    well I’m not writing all that over again. Anyway, just wanted to say wonderful blog!

  35. First of all I want to say fantastic blog!
    I had a quick question that I’d like to ask if you don’t mind.
    I was curious to find out how you center yourself and clear your head before writing.

    I’ve had a difficult time clearing my thoughts in getting my thoughts out there.
    I do enjoy writing however it just seems like the first 10 to 15
    minutes are generally lost simply just trying to figure out how to begin. Any
    suggestions or tips? Appreciate it!

  36. Hi, I do believe this is an excellent website. I stumbledupon it 😉 I’m going to return once again since
    I saved as a favorite it. Money and freedom is the greatest
    way to change, may you be rich and continue to guide others.

  37. Hey just wanted to give you a quick heads up. The
    text in your article seem to be running off the screen in Ie.
    I’m not sure if this is a formatting issue or something to do
    with web browser compatibility but I figured I’d post to let you know.
    The design look great though! Hope you get the issue resolved soon. Thanks

  38. This is the right web site for everyone who
    would like to understand this topic. You understand a whole lot its almost tough to argue with you (not that I personally will need to…HaHa).
    You definitely put a new spin on a subject that’s been written about for a long time.

    Wonderful stuff, just wonderful!

  39. This design is incredible! You obviously know how to keep a reader entertained.

    Between your wit and your videos, I was almost moved to start my own blog (well,
    almost…HaHa!) Wonderful job. I really enjoyed what you had to say, and more than that,
    how you presented it. Too cool!

  40. Wow! This blog looks exactly like my old one! It’s on a entirely different topic but it has pretty much the same layout and design. Great choice of colors!

  41. Hi there i am kavin, its my first time to commenting anyplace,
    when i read this article i thought i could also create comment due
    to this brilliant article.

  42. Hello There. I found your weblog the usage of
    msn. That is a really neatly written article.
    I will be sure to bookmark it and come back to read more of your helpful info.
    Thanks for the post. I’ll definitely comeback.

  43. Hi, I do believe this is an excellent site. I stumbledupon it 😉 I am going to return once again since I saved as
    a favorite it. Money and freedom is the greatest way to change,
    may you be rich and continue to help others.

  44. you’re really a good webmaster. The site loading pace is amazing.
    It kind of feels that you are doing any unique trick. Moreover,
    The contents are masterpiece. you have performed a great task in this subject!

  45. I love what you guys are up too. This sort of clever work and reporting!
    Keep up the very good works guys I’ve added you guys to our blogroll.

  46. With havin so much content do you ever run into any problems of plagorism or copyright violation? My
    site has a lot of unique content I’ve either authored myself or outsourced but it seems a lot of it is popping it up all over
    the web without my authorization. Do you know any methods
    to help protect against content from being stolen? I’d genuinely appreciate
    it.

  47. I just could not go away your web site prior to suggesting that I
    actually loved the usual information an individual
    supply to your guests? Is gonna be back regularly to investigate cross-check new posts

  48. I would like to thank you for the efforts you have put in writing
    this website. I am hoping to view the same high-grade blog posts from you later on as well.
    In truth, your creative writing abilities has motivated me to get my very own blog now 😉

  49. It’s really a nice and useful piece of information. I’m happy that you
    shared this useful info with us. Please stay us informed
    like this. Thanks for sharing.

  50. Hi, I do think this is a great website. I stumbledupon it 😉 I am going to come back yet again since I book-marked it. Money and freedom is the greatest way to change, may you be rich and continue to guide others.

  51. Have you ever thought about including a little bit more than just your articles?
    I mean, what you say is important and everything.
    However think about if you added some great images or video clips to give your posts
    more, “pop”! Your content is excellent but with images and videos, this blog
    could undeniably be one of the most beneficial in its niche.
    Great blog!

  52. Wow, incredible blog layout! How long have you
    been blogging for? you make blogging look easy.
    The overall look of your site is great, as well as the content!

  53. Appreciating the persistence you put into your website
    and detailed information you present. It’s nice to come across a blog every once in a while
    that isn’t the same old rehashed information. Excellent read!
    I’ve bookmarked your site and I’m adding your RSS feeds to my Google
    account.

  54. It’s really a great and helpful piece of information. I’m happy that you simply shared this useful information with us.
    Please stay us up to date like this. Thanks for sharing.

  55. This is the perfect blog for anyone who wishes to find
    out about this topic. You realize a whole lot its almost tough to argue with you (not that I
    personally will need to…HaHa). You certainly put a new spin on a subject that’s been discussed for years.
    Great stuff, just wonderful!

  56. Hello! I could have sworn I’ve been to this website before but after
    browsing through some of the post I realized it’s new to me.
    Anyways, I’m definitely delighted I found it and I’ll be bookmarking and checking back frequently!

  57. Thanks for sharing your info. I truly appreciate your efforts and I am waiting for your further write ups
    thanks once again.

  58. We’re a group of volunteers and opening a brand new scheme in our community.
    Your website provided us with valuable information to work on.
    You’ve performed a formidable task and our whole neighborhood shall be grateful to you.

  59. Just wish to say your article is as astounding. The clearness in your submit
    is simply spectacular and i can suppose you’re knowledgeable
    on this subject. Well along with your permission allow me
    to seize your RSS feed to keep updated with coming near near
    post. Thanks a million and please carry on the gratifying work.

  60. Valuable information. Lucky me I found your website accidentally, and I’m stunned why this twist of fate didn’t took place
    in advance! I bookmarked it.

  61. We’re a group of volunteers and starting a
    new scheme in our community. Your website offered us with valuable information to work
    on. You have done an impressive job and our entire community will be thankful to you.

  62. A person essentially lend a hand to make seriously articles
    I might state. This is the first time I frequented your web page
    and to this point? I surprised with the analysis you made to make this actual post amazing.
    Magnificent task!

  63. Hi there this is kind of of off topic but I was wondering if blogs use WYSIWYG
    editors or if you have to manually code with HTML. I’m starting a
    blog soon but have no coding experience so I wanted to get advice from someone
    with experience. Any help would be enormously appreciated!

  64. I’ve been exploring for a bit for any high quality articles or blog posts on this sort of space .
    Exploring in Yahoo I ultimately stumbled upon this site.
    Reading this information So i am satisfied to convey that I have a very just right uncanny
    feeling I came upon just what I needed. I such a lot no doubt will make certain to do not put out of your mind
    this web site and provides it a look on a constant basis.

  65. Hi, this weekend is pleasant in support of me, since this point in time i am reading this impressive educational
    article here at my house.

  66. Wonderful blog! Do you have any tips and hints for aspiring writers?
    I’m planning to start my own website soon but I’m a
    little lost on everything. Would you recommend starting with a free platform like
    Wordpress or go for a paid option? There are so many choices out there that
    I’m completely overwhelmed .. Any suggestions? Many thanks!

  67. Thank you for the good writeup. It in fact was a amusement account it.
    Look advanced to far added agreeable from you!
    However, how could we communicate?

  68. It’s really very complex in this full of activity life to listen news on Television, so I only use internet
    for that reason, and take the hottest news.

  69. Oh my goodness! Amazing article dude! Thank you, However I am having troubles with your RSS.
    I don’t know why I cannot join it. Is there anyone else having
    the same RSS problems? Anybody who knows the answer can you kindly respond?
    Thanks!!

  70. It’s really very complex in this busy life to listen news on Television, thus I
    just use the web for that reason, and get the newest
    information.

  71. What’s up everyone, it’s my first visit at this website, and article is in fact fruitful designed for me, keep
    up posting these types of articles or reviews.

  72. magnificent post, very informative. I wonder why the opposite specialists of this sector don’t
    realize this. You must proceed your writing.
    I’m sure, you’ve a great readers’ base already!

  73. I’m amazed, I have to admit. Rarely do I come across a blog that’s
    equally educative and engaging, and without a doubt, you’ve hit the nail on the head.
    The issue is an issue that too few men and women are speaking intelligently about.

    I’m very happy that I stumbled across this in my search for something relating to this.

  74. Good day! I could have sworn I’ve visited
    this website before but after browsing through many of the articles I realized it’s new to me.
    Nonetheless, I’m certainly pleased I came across it and
    I’ll be book-marking it and checking back frequently!

  75. Pretty great post. I just stumbled upon your weblog and wished to say that I have really
    enjoyed surfing around your blog posts. After all I’ll be subscribing to your feed and I’m hoping you write again soon!

  76. Thank you, I have just been looking for info about this topic for ages and yours is the
    best I have discovered till now. However, what
    concerning the conclusion? Are you sure concerning the supply?

  77. You really make it seem so easy with your presentation but I find
    this matter to be really something that I think I would never
    understand. It seems too complicated and extremely broad
    for me. I’m looking forward for your next post, I will try
    to get the hang of it!

  78. Spot on with this write-up, I actually think this website needs far more attention. I’ll probably be back again to read through more,
    thanks for the info!

  79. This design is incredible! You certainly know how to keep a reader entertained.
    Between your wit and your videos, I was almost moved to start
    my own blog (well, almost…HaHa!) Fantastic job.
    I really loved what you had to say, and more than that, how you presented it.
    Too cool!

  80. Pretty section of content. I just stumbled upon your web
    site and in accession capital to assert that I get
    in fact enjoyed account your blog posts. Anyway I will be subscribing to your
    augment and even I achievement you access consistently fast.

  81. I must thank you for the efforts you’ve put in writing this blog.
    I am hoping to view the same high-grade content from
    you later on as well. In truth, your creative writing abilities
    has encouraged me to get my very own website now 😉

  82. With havin so much written content do you ever run into any problems of plagorism or copyright infringement?
    My website has a lot of exclusive content I’ve either written myself or outsourced but it seems a lot of it is popping it up all over the web without my agreement.

    Do you know any ways to help prevent content from being ripped off?
    I’d definitely appreciate it.

  83. Hi, I do believe this is an excellent website. I stumbledupon it 😉 I am going to come back yet again since i have book-marked it. Money and freedom is the greatest way to change, may you be rich and continue to guide other people.

  84. Maintenant, la technologie de positionnement est largement utilisée. De nombreuses voitures et téléphones portables ont des fonctions de positionnement, et il existe également de nombreuses applications de positionnement. Lorsque votre téléphone est perdu, vous pouvez utiliser ces outils pour lancer rapidement des demandes de localisation. Comprendre comment localiser l’emplacement du téléphone, comment localiser le téléphone après sa perte?

  85. Vous pouvez également personnaliser la surveillance de certaines applications, et il commencera immédiatement à capturer régulièrement des instantanés de l’écran du téléphone.

  86. Good post made here. One thing I’d like to say is the fact most professional domains consider the Bachelor Degree as the entry level requirement for an online certification. Though Associate Certification are a great way to start out, completing your Bachelors starts up many doors to various careers, there are numerous on-line Bachelor Course Programs available by institutions like The University of Phoenix, Intercontinental University Online and Kaplan. Another thing is that many brick and mortar institutions present Online versions of their qualifications but usually for a extensively higher price than the corporations that specialize in online higher education degree programs.

  87. An added important part is that if you are an older person, travel insurance intended for pensioners is something you need to really take into account. The old you are, the harder at risk you are for allowing something awful happen to you while in foreign countries. If you are not covered by many comprehensive insurance policies, you could have a few serious troubles. Thanks for revealing your good tips on this web site.

  88. Greetings, I do think your site might be having internet browser compatibility issues.
    Whenever I take a look at your website in Safari, it looks fine however when opening in IE, it’s got some overlapping issues.
    I simply wanted to give you a quick heads up! Aside from that, fantastic blog!

Leave a Reply

Your email address will not be published. Required fields are marked *

Skip to content