The story of krystal
Hello, my name is Krystal and i have a 2 1/2 year old daughter name Isabella Faith. Isabella was born with Mckusic Kaufman Syndrome and polydactyly on her hands she also had 6 toes on both her feet. Her girl parts from the inside weren’t all connected together. It can also cause heart problems and sometimes blindness, obesity is also a chance for her to have. It is a rare genetic disorder. It usually comes from the Amish. While i was pregnant with her we didn’t know that she was going to come out the way she did. We did know she had some fluid in her abdomen but we didn’t know anything else besides that. The day i gave birth i couldn’t even hold my child because she had to go into emergency surgery. After she got out of surgery she was place in the niccu. What i saw was totally unexpected. That’s when they told me what she had. They explained to me what she had was very rare. It was such a scary thing to go through. To see this little baby with all these machines and tubes on her. She had extra fingers, toes,hip dysplasia , where she pooped from was to close to her girl part, she also had a mickey button put in to remove fluid from her abdomen.She is now 2 1/2 years old and has gone through 8 surgeries. I was always in and out the hospital with her. one time she had surgery to fix her inprefeial anus and she ended up having to get a colostomy bag put in because her surgeon had to use a piece of her intestine. That was an 8 hour long surgery. That whole night she was in so much pain she literally cried a whole 24 hrs straight. when the finally gave her some medication her heart rate went down into the 20s her lips were blue her eyes rolled back it was the most scariest thing to go through almost losing a child..Thankfully they got her heart rate back up and she ended up okay. And that was at 8 months. She also has developmental delays. She started walking at 2.She only says about 4 words. She has since had surgery on her hands to get her extra digits removed. Shriner’s did an amazing job. They are honestly the best. My daughter now has asthma and animeia and tracheal Malaysia, she also has one normal kidney and one not so normal included with her syndrome. This is something shes going to have for the rest of her life.She has been through so much in the past 2 1/2 years. She is honestly the strongest person i know. I cant even imagine going through half the things she has gone through. She is now waiting to go through hip surgery. Isabella now has early interventions and is in daycare. Im told she has everyone’s hearts at her daycare. She is a happy little girl. Isabella has a lot of scars on her tummy from multiple surgery’s but you wouldn’t even be able to tell what she has gone through because she is such a happy little girl with an amazing personality. We have along way to go but in the end i have FAITH.