She admitted over there almost 2 and half months in NICU Later we were told that she born with a rare brain development issue which is called 'Pachygyria' a neuronal migration disorder with thick convolutions on cerebral cortex.
It leads to mental retardation and intractable seizures. She was having 6-10 seizures in every one hour, duration of those seizure were around/in-between 10 seconds to 1 minute AND every coming seizure was taking her on the edge of Total Brain Damage.
Medicines which were prescribed constantly was put her on a sedating condition; so that she could have minimum seizures or the side effects due to the minimal brain usage.
Imagine how hard it is to face the reality - living and caring a CHILD who doesn't have an ability to recognize it's PARENTS or Siblings, doesn't react on the SOUND around you but lives in-constant pain or in a sedated condition . . . .
There's no cure of this disease with the medicine till TODAY except to comfort the patient OR a Brain Surgery (if it's possible . . .) because you also have to meet with the minimum weight and age requirement for this type of surgery.
Finally - - - WE ARE GLAD THAT we have found an amazing team of the Doctors in Riley Hospital (Indianapolis) who have been trying their best to comfort her in this condition from last 8 months and NOW have given us a GO HEAD for her Brain Surgery which is going to happen on 3rd October 2018.
What SURGEONS WILL PERFORM?
They would perform a surgery known as Hemispherectomy involves disconnecting one side of the brain (that is, one cerebral hemisphere) from the rest of the brain. It is only considered for patients (usually children) who have severe epilepsy with seizures arising from only one side of the brain.
On 3rd October 2018 - Team of Doctors from Riley performed 14 hours successful surgery; removing right part of the brain. Since her diagnosis were rare and it was the first type of the surgery as well; so it was covered in different media outlets as well. Her surgery and diagnosis can be found on Riley Children Hospital's Facebook page (official)
You Know NOT even the best insurance covers all the unforeseen costs associated with a Brain Surgery and the life changes that follow.
Please feel free to DONATE and keep my daughter in your prayers and thoughts, that's what we need most at this time . . .
Kindly note that -
Beneficiary for this campaign is Zahra, and Zahra's father will be handling withdrawals for her. Funds will be used toward medical bills, to support the family with future financial obligations, traveling and living cost during the surgery and some part of the funds will be donated to the Riley Trust.
If you have any question please feel free to contact with me directly at [phone redacted].
Thank you for your support!!!
That's my beautiful ANGEL when she born (photo taken in Riley Hospital)
Another Pic of my beautiful angel (when she was 6 months old) ￼
Zahra's recent picture (she's now 8 months old) ￼
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