Helping Nissa Victorique overcome Apert Syndrome

I am Sarah Jane M. Agojo from Philippines this is my niece’s story:

June 23, 2023 Our Baby Nissa, my niece, was born with a rare craniofacial condition called Apert Syndrome. Her condition was a complete surprise to us! It wasn't easy but as days pass by we have learned to accept God's special gift to us.

Apert Syndrome is a condition where the sutures in the skull fuse too early causing a different head shape. It also causes Syndactyly - fusion of the bones in the hands & feet and also cleft of the mouth palate (potential causing difficulties with feeding and speech). However, with such amazing event Nissa has no cleft. Apert Syndrome can also mean Choanal stenosis (narrowing of the airway) which could potential cause breathing difficulties. There is also potential cause for global development and learning delay. Because of her condition, she was sent to NICU for further observation. Her pediatric doctor suspect that she has pneumonia and asthma as well but this girl cried the loudess in the room.

Nissa will have a long road ahead and this lifelong journey will never be a walk in the park but we know for sure that Nissa will live up to her name (Always striving, Tested) and will come up Victorious in a unique way (Victorique).

This brave baby is a strong fighter for her strength was already measured when she had to experience an IM injection (intra-mascular). She just cried for 4 secs and overcame it elegantly with a smile in her sleep, yup you read it right after 4 secs of crying she sleeps with a smile and we as parents are proud of it.

In order for our baby to have a beautiful life despite her illness, we are asking everyone to support us through your prayers and financial help as our family travels through this special journey. Even though Nissa hasn't had any surgery yet, the entire family is preparing for it with love and harmony among friends and family. We are in need of financial assistance, and with the support of this Go Fund Me page, we will be able to provide for our baby NISSA's needs while she battles her syndrome. She can thus share in the experiences that every youngster deserves to have. Even though it won't be easy, everything will be worthwhile!

#apertsyndrome #raisingawareness