Makayla Jenise Nunez's Medical Fund

On December 30, 2016 Makayla was born and diagnosed with a rare condition called Microcephaly. Which her head is smaller due to abnormal brain development. A condition that can cause a delay or learning disability. On her second week from birth she was sent to the NiCU due to failure to thrive and stayed in for two months. During that time she was diagnosed with severe reflux that made her feeding and breathing very poor. My wife and I decided to make her undergo a Nissen Fundoplication and Gastrostomy Tube surgery to improve her nutrition intake. After NiCU she was sent to Children Specialized Hospital for a month to receive Physical, Speech and Occupational therapy. 

May 25, 2017 Makayla started having a lot of seizure episodes and was sent to the Emergency Room. With the help of the EEG, the neurologist discovered that Makayla is battling against a rare type syndrome. A rare Epilepsy called Ohtahara Syndrome. 

July 2017  We finally got the genetic test results. Makayla has AIMP1 genetic mutation that caused her microcephaly and Ohtahara syndrome. Unfortunately, this very rare genetic mutation causes a progressive neurodegenerative condition. During this month, makayla’s seizures was out of control. She had experienced 100 or more seizures per day. She wasn’t responding to any antiseizure medications. She was put into an induced coma to try to rest her brain from her nasty seizures. During this time all of her doctors said there’s nothing much they can do. We brought makayla home on palliative care.  Everyone thought she will rapidly decline BUT SHE FOUGHT BACK! 

She’s been through a lot but she continues to fight and amaze doctors on how strong she is. Our daughter is a warrior. We as her family, continues to fight alongside with her. 

We are are asking for your prayers, love, support and help in any way or form for our daughter. No amount is small. With these we can continue to stand strong and fight for our daughter. Thank you in advance for your generous support and prayers for my little angel Makayla (God's gift) Jenise Nunez. 

Please SHARE to spread our little angel’s story and raise awareness about ohtahara and AIMP1 genetic mutation.

Donations

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  • Anonymous 
    • $100 
    • 34 mos
  • Anna Liza Cristobal 
    • $50 
    • 34 mos
  • Azenith Ramos 
    • $50 
    • 34 mos
  • Rod & Nympha Mallanao 
    • $100 
    • 34 mos
  • Sun-ah Park 
    • $50 
    • 34 mos
See all

Organizer

Mario Jesson L. Nunez 
Organizer
Dumont, NJ
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