The story of Kristi
At 5 months pregnant we found out our baby boy wasn’t moving his arms and legs, we then began seeing a ton of specialist to get answers , his heartbeat then began to drop at 33 weeks we had a c section he was 4 pounds he then stayed in NICU for two months. Tons of issues arouse and more symptons , the main one is Amc known at arthrogryposis , he also can’t eat by mouth or suck on nuk, we then put g tube in, he also was having what looked like siezures but was actually brain abnormalities , he also can’t open eyes like we do he opens them half way ,he can’t see normally, he also has lynfademia in legs, he also has sleep apnea so had to be put on oxygen, heartbeat was also always very high, we later then got togeather with genetic to see what caused this and why and what is it. 5 months later we found out he has weicker/ Wolff syndrome, genetics has never heard of this and has little research on this, so all we can do is treat the symptoms. He is the only one in the U.S with this disease ,their was 15 boys that did have this ,they are dead and we can’t ask questions , this only happens in boys and was a fluke thing genetics said theirs nothing we could have done different, know my baby boy is 11 months old , he has made progress but very little, he is still on oxygen at night only and he is still gets g tube feed and he can’t sit on his own he is two week , he also can’t see like Normal baby, he can only see like a 2-4 month old baby, he has a hard time lifting chin up. We do lots of pt and Ot at home and still lots of doctors we see, we don’t know his prognosis , we live day by day just praying for a miracle that he can someday live a somewhat normal life , we just wish we had a family with the same syndrome so we could get questions answered and have some Guidness . I’m thankful he is alive but so scared for his future , we love him unconditionally, he’s our miracle baby