I am a first time mom of a very beautiful baby girl, now 13months old. She was born at 34wks as she was an IUGR (Intra uterine growth restriction) baby. After birth her growth was still slow and At 1yr we found out that she has a genetic condition where her X-chromosome is duplicated on her 5th chromosome. She is therefore a very tiny baby and has problems gaining weight (weighs only around 12lbs ) no matter how much she eats. Also because she was born preterm , at 1 yr we did an MRI to find out she has delayed myelinaiton causing her delayed development. She still is not sitting on her own but rolls over and is showing signs of trying to sit . She had a series of seizures few months back but are now in control after treatment. Otherwise she is a very happy and a social baby and we (her father and i) love her to bits ! We are really lucky that we have a strong support of our family and friends .
I am calling out to all the parents of children with a similar condition who are willing to share their stories of delayed myelination or chromosome disorder. I know each child is different but we all need the strength to deal with our precious ones . just a small effort to help and support each other .
Thank you all you wonderful people for listening and taking the time to read my story.
More power to the moms and dads of every special child !