Mandy's Road to Surgery & Recovery
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I recently became a new aunt to identical twin girls. Two little princesses. Lia and Mandy, Born December 8, 2017... They are angels and a new addition to our family.
While Lia was able to make it home, Little Mandy had to stay at the hospital.
She was born with a huge lump at the back of her neck. Her neuro surgeon said that it is a rare genetic disorder called Meningoencephalocele. (A very rare developmental disorder where a part of the membrane that covers the brain and or part of the brain itself protrudes through an abnormal opening in the skull. The condition may be asymptomatic or if the defect is large, severe neurological abnormalities may result- source: checkorphan.org/diseases/meningoencephalocele) This apparently only happens in 1 out of 5,000 births.
Symptoms includes: Hydrocephalus, Paralyzed arms and legs, Small head, Vision problems, Developmental delay, Retarded growth, Mental retardation, Seizures, Ataxia, Gap in skull bone, Protruding brain tissue.
Additional Educational Materials: https://rarediseases.info.nih.gov/diseases/3473/meningoencephalocele
A series of tests is needed and since it is almost at the cerebelum part, they say that it may also affect her long term development.
The original plan was to do the surgery after her first month. Now, the pediatric neuro surgeons say that it has to be performed the soonest possible time as the lump is already at a point where in it could leak and Mandy may be susceptible to infection. We are coordinating with a couple of hospitals for her transfer to get the surgery done. The only challenge is that there is no available incubator for the NICU.
The surgery will indeed be costly. Something that my sister could not afford and would be needing help with.
I have been doing charity work for indigent sick kids of a government hospital back in the Philippines for 12 years now and didn't think that this would happen to our family. Sick children always have a special place in my heart and this is closer to home... I would do everything for family.
We have been blessed to have 2 new babies and we would do anything to ensure their well-being. Right now, baby Mandy needs help the most. We humbly ask for you to share her story, support and pray for her. We would be forever grateful if you could spread the word out there and help out
Please help bring Little Mandy home to her twin sister Lia.
Love... Peace... and Unity
For those in the Philippines you may send donations directly to my sister
Jessica S. Dantes,
BDO ( Sun Valley Branch)
SA Account No. 011040013315
While Lia was able to make it home, Little Mandy had to stay at the hospital.
She was born with a huge lump at the back of her neck. Her neuro surgeon said that it is a rare genetic disorder called Meningoencephalocele. (A very rare developmental disorder where a part of the membrane that covers the brain and or part of the brain itself protrudes through an abnormal opening in the skull. The condition may be asymptomatic or if the defect is large, severe neurological abnormalities may result- source: checkorphan.org/diseases/meningoencephalocele) This apparently only happens in 1 out of 5,000 births.
Symptoms includes: Hydrocephalus, Paralyzed arms and legs, Small head, Vision problems, Developmental delay, Retarded growth, Mental retardation, Seizures, Ataxia, Gap in skull bone, Protruding brain tissue.
Additional Educational Materials: https://rarediseases.info.nih.gov/diseases/3473/meningoencephalocele
A series of tests is needed and since it is almost at the cerebelum part, they say that it may also affect her long term development.
The original plan was to do the surgery after her first month. Now, the pediatric neuro surgeons say that it has to be performed the soonest possible time as the lump is already at a point where in it could leak and Mandy may be susceptible to infection. We are coordinating with a couple of hospitals for her transfer to get the surgery done. The only challenge is that there is no available incubator for the NICU.
The surgery will indeed be costly. Something that my sister could not afford and would be needing help with.
I have been doing charity work for indigent sick kids of a government hospital back in the Philippines for 12 years now and didn't think that this would happen to our family. Sick children always have a special place in my heart and this is closer to home... I would do everything for family.
We have been blessed to have 2 new babies and we would do anything to ensure their well-being. Right now, baby Mandy needs help the most. We humbly ask for you to share her story, support and pray for her. We would be forever grateful if you could spread the word out there and help out
Please help bring Little Mandy home to her twin sister Lia.
Love... Peace... and Unity
For those in the Philippines you may send donations directly to my sister
Jessica S. Dantes,
BDO ( Sun Valley Branch)
SA Account No. 011040013315
Organizer and beneficiary
Icca Dantes
Organizer
Fairfax, VA
Ma Arlyn Sta Ines
Beneficiary
