In November 2008 Matilda was delivered, it was a straight forward natural birth, a healthy little baby girl. All checks were done at the hospital and we were ok to go home, at her six week check I asked the GP about her floppiness to which he replied "all newborns are floppy". When she was 12 weeks I was still concerns about how floppy she was but was continuously reassured by professionals. At age 5 months Matilda became constipated and was seen by a consultant, who again was not concerned about her development.
By age 9 months Matilda was unable to sit, pick up toys, could barely roll and was still like s newborn. I called the health visitor again and she arranged a check, she agreed there could be some delays and referred Matilda for physio. At age 1 Matilda was diagnosed with hypermobility & low muscle tone. Sadly she did not improve and we began the search for a diagnosis, this involved meeting with a geneticist and having lots of tests. At age 3 the hospital said its severe developmental delay and unfortenately to this day we still have no formal diagnosis. Matilda still struggles to sit, she can not stand or feed herself. She still struggles with reflux and has to have special diets and meds for it. She is unable to talk but has started making sounds, she laughs, claps her hands & shouts when happy or sad. She's a unique little girl who doesn't need a label.