Lainey's Story

Lainey was born September 23rd, 2014. Pregnancy was followed closely be a specialist because she wasn't growing well IUGR she weighed 5lbs 3oz and was 16in long. Our cords that were connected together were as thin as a spaghetti noodle. She had to stay in the hospital for 2 weeks because of feeding difficulties.

Finally, we got her to take breast milk by bottle. She went home at 4lbs 7oz. All newborn tests came back normal. Pediatrician came in and said she had very low set ears. At home, she screamed every day and night for hours and nothing we did would calm her. Finally, at 5 months I finally got her to latch on my breast... 1 month later I took Lainey to the hospital because she wasn't tolerating any of her feeds and was in such bad pain. They told me the worse news a mama can hear about my breast milk. My sweet tiny baby was allergic to my milk. I was devastated... She refused to drink formula from a bottle and was NG fed for 4 months till we decided to get her a g-tube.

At 6 months, she was also diagnosed with communicating hydrocephalus and required multiple lumbar punctures to drain the fluid from the brain through the spine. Lainey has been in special needs programs since she was 3 months old. Her whole life it's been a struggle to get her to gain weight. By the time she was 1 she was just 14lbs. She has been hospitalized more than 80 times and had been diagnosed with multiple conditions and needs round the clock care. Her sugars drop low and she will go into a coma.

Lainey has the exome sequencing test which showed multiple things with no significance of her symptoms. Finally, after 3 appeals we had the whole exome sequencing test done which came back showing our sweet Lainey to have ZTTK syndrome. Finally, we had answers, but they really weren't answers since this condition is so rare... Lainey is 1 out of 100 people in this world with this condition. We are continuing to adapt to her condition which has added another 3 teams of specialist to our squad of miracle workers.

Lainey is so loved by her Mommy, Step daddy, Nana, big sister Arraya and little big brother Alexander. Please take a look at some of Lainey's beautiful life.