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Natalie001

Hi, her name is Natalie Leong and she has Aicardi. She is my little princess and she joined our family last year in December. What is Aicardi? It is a rare genetic malformation syndrome where there is an absence or underdeveloped tissue connecting the left and right halves of the brain.  Currently, there is no cure for Aicardi.

In her case, she is completely missing the tissue called corpus callosum. I mulled quite a bit on whether I wanted to start writing about this but when I realised that our own search for relevant cases in Singapore yielded very little, I thought it was good to share.

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We were lucky that we found out pretty early. Lucky in the sense that we are now prepared for it and we are able to start treatment earlier. My wife, who is always noticing little things about our kids, saw that Natalie’s right pupil was significantly smaller than her left. I wasn’t too worried but we checked with our paediatrician and he told us to consult an eye specialist.

I must admit that everything from that point on felt like a flurry of activities. From the visit to the eye specialist, to the subsequent MRI, and consulting a neurologist – it was a blur. Throughout the entire process, we hoped that it wouldn’t be. But the MRI confirmed it. If your child is suspected to have Aicardi, then MRI is the best diagnosis you will have. It is the clearest indication if there is indeed an absence of corpus callosum.

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How does this affect her? We really don’t know. And that is probably the most frustrating part of it. The complications are so wide ranging that we don’t know how it will be for her. We can only hope and pray for the best while mentally preparing ourselves for the worst.

What we do know is that she is now experiencing seizures and that they have started since she was three months old. What we do know is that the seizures affect her development.

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So what are we doing now? We are now seeing Professor Low Poh Sim at National University Hospital and the priority is for us to treat her seizures. We are now on our third medication to try and stop the seizures. We started with prednisolone, carbamazepine and we are now on keppra. Hopefully it works but she is still having seizures every 3-hour or so.

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I am sharing her story because she is my lil fighter. While it pains us to see her fight so hard at such a young age, we know that she will triumph in the end. I also wanted to share her story and our journey with her so that any parents with children of the same condition will be able to share their stories with us as well.

9 thoughts on “hi, her name is natalie

  1. my prayers are with you and little Natalie. She will grow up strong and healthy. Our best wishes to her and her speedy recovery

  2. “Kyo’o’s misfortune will change into fortune. Muster your faith, and pray to this Gohonzon. Then what is there that cannot be achieved?”
    Sharing with you a strong message from Nichiren to his disciple Shijo Kingo. Shijo Kingo was truly a role model disciple we all could learn from.
    It is in this Buddhism that I learnt about one’s life mission and through strong faith we shall triumph. Witnessing our little ones going through hardship is the most challenging thing a parent have to go through. But I always keep in mind that my little ones chose me to be their parent not by coincident but they are here to give me my life lesson. My little girl displayed to me her fighting spirit as young as the day she was born. Much tears shed but more were gratitude and appreciation were to this wonderful Buddhism that showed me the way. I also believe that they also chose me to be the parent because they know we have life’s most precious treasure to be passed on to them that has the power to lessen one’s karmic retribution.
    Keep on fighting little Natalie. Though you may be small, you are born to move the world!

  3. I fell for you my friend as my princess was in this situation since she’s 2 month old. Tried more than 10 different combinations of meds and diet (ketogenic and Atkins diet) suggest by most of the neuro doctor but still unable to control her seizure until the recently when we begin to try a rare meds for a year. Currently she’s in controlled for the last 3 month having no seizure and we pray hard this will be permanent. Be strong.

  4. Hi Nick Khaw,

    Thanks for your comment. May I know which meds is your daughter currently on?

  5. She’s on rufinamide + epilim. From my knowledge so far, different seizures countered or controlled by different meds and this must be advice by your doctor. My daughter has been battling the seizure for more than 6 years and only now we are seeing slight improvement (still praying hard that monster won’t make a come back).

  6. Thanks, will consult the doctor but good to know names of other possible meds we can try if keppra doesn’t work out.

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