Athena Rose was born full term at 40 weeks and 1 day, with one of the rarest genetic syndromes in the world, only 150-200 recorded cases, called Hallermann-Streiff Syndrome or HSS.

Even though Athena’s case is labeled mild, she still has been facing critical challenges due to the craniofacial deformities of the syndrome. Because Athena has such tiny facial bones, affecting her jaw and maxillary facial, she has been unable to eat, so she had a G tube placed at 11 days old. Athena also faces severe ocular complications and has already had 4 eye surgeries to remove congenital cataracts at 2 and 3 months of age, and permanent lens implant surgeries at just 9 months and 10 months of age. During this process, it was discovered she also had optic nerve swelling and elevated cerebral spinal fluid pressure. To diagnose this, Athena underwent a lumbar puncture. Athena’s small high-arched palate is obstructing her nasal airways, and this was additionally worsened by enlarged adenoids. This past February, she had her adenoids removed along with tubes placed in her ears, and a steroid eye injection to try to decrease optic nerve swelling. Surgery number 7 is just around the corner where they will once again intubate Athena for a repeat lumbar puncture and a second steroid eye injection. She is considered slow growth/borderline short stature, so she is the size of a 5-month-old. Along with slow growth, her cranial sutures are wide open, taking their time to close. This may mean future cranial skull coverage surgery at age 5. Athena was a breech baby, so she also had hip dysplasia that may need surgical hip repairs at age 3. She was born with extra natal teeth, and during one of her cataract surgeries, they had to extract 8 teeth so she didn’t aspirate. Due to removing them, we don’t know how many primary teeth she’ll actually have, and she will have extensive dental jaw and joint surgeries in her future. This journey has been very difficult for the Ananiadis family, as Athena had to start her first 45 days of life in the NICU. Because of the rarity of this syndrome, Athena sees over 17 specialists and is constantly traveling back and forth to children’s hospital for weekly appointments. Her medically fragile situation puts her vulnerable to sicknesses, and she was recently admitted with RSV for 4 days on oxygen support.

Athena’s mom, Katie, has been her lifeline. Between the constant vomiting and suctioning due to increased aspiration risks, nightly nasal stenting to keep nasal airways open, changing her G tube dressing twice a day, keeping her medications filled, making sure inventory on medical supplies doesn’t grow, scheduling appointments and surgeries, arranging weekly visits from physical therapy, occupational therapy, special family instruction, and a million things more, Katie is her 24/7 caregiver, who has had to give up her career to take care of Athena. Athena’s father, Stefan, has had to go to work every day dealing with the emotional and mental difficulties as a first-time father that this has put on him. It has been extremely difficult during these hard times financially, especially trying to keep giving her two teenage boys the life that they also deserve.

Athena is a warrior, who impresses everyone around her every day with how far she has been able to come with all of her medical setbacks. It would mean the world and more if you are able to share Athena’s story or donate to help lift the financial burden that they are facing now, and what their future entails.