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July 13, 2018 | Janine Samuela-Carasus

 2-year-old Zoe is reported to be the youngest anti-NMDAr encephalitis patient to date in the Philippines.

Here’s my Zoe, my 2-year-old AE Warrior.  Ten months ago, after she was diagnosed with this horrible disease – Autoimmune Encephalitis – she couldn’t do anything.  She was in a vegetative state for 3 months.  My child lost her ability to speak, eat and walk, basically everything.  It was like raising an infant all over again (with a lot more love, effort and patience).  Her agitation, movement disorder, hallucinations and insomnia were like hell for us.  I could barely look at her whenever her disease was in a flare because her suffering was so unbearable to watch.  To this day, we don’t leave her side for a single moment.  Together, we walk with her in this tough journey.  Our situation, battling anti-NMDAr encephalitis, has allowed me to witness everyday miracles. Big ones and little ones, they are still miracles.

 

Zoe was treated with steroids and IVIG.  We thank God she responded to the first line treatments. She has received her treatments at Perpetual Help Medical Center.  According to her doctors, our Zoe is the youngest documented case of Anti-NMDAr encephalitis here in the Philippines.

Currently, our 2-year-old AE Warrior is having intensive Occupational Therapy and Physical Therapy three times a week to regain her strength.  We have also enrolled her in a play group as part of her rehabilitation.

 

Slowly Zoe has re-learned how to eat, stand, walk with minimal support, talk a little and play again.  She’s recovering well and almost back to her normal self.  Her courage and determination has been inspiring to witness.  Our love for her, sustains her and sustains us.  We have faith that through our love, support and prayers, she will be completely healed.

So, for any anyone who is having a hard time or a bad day, do not give up!  My faith tells me that God is in control. I am reassured by my faith.  As a Mother who is going through this horrifying experience, I urge you to keep the faith!  Believe that all will be well in time.  God bless us all.

 “Miracles happen, big ones and little ones every day.”

~Janine Samuela-Carasus


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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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