MaKenzi was born on Feb 2,2017 at 34 weeks, she then spent 2 months in the NICU. At her 9 month check up her doctor and i decided we needed to go to a neurologist, we then did a genetic swab test and 4 weeks later December 18,2017 we found out that she was diagnosed with PTLS ( Potocki-Lupski Syndrome), it's a rare syndrome, every doctor we have been to has had to research it and the things that come with it, 1 in 20,000 people have this.
Since we have known about it MaKenzi had seen a cardiologist, has had an MRI done, 3 sleep studies, had surgery Feb 9,2017 for her adenoids since they were enlarged. Her first sleep study she failed that being said she had to do another and that is when they put her on a c-pap, we are hoping that with the surgery she had we will not need the c-pap anymore but a 3rd sleep study will have to be done to determine. MaKenzi is 4 to 6 months behind on development, she can't roll over,crawl,walk, just yet but we pray with time she can. Autism comes with the syndrome as well we will not know this for sure till 15 months to 2 years of age. At this time we are asking for help, help to get her to her appoinments in the Woodlands, Katy, and Houston area, we also go to Clear Lake 3 times a week for therapy. She does have insurance but they will only pay for 1 item every 5 years, and we are not sure what the future hold. So please if your not able to donate we ask to please keep her in your prayers as we go through this journey.
THE WILLIAMS FAMILY