28th March 2019
Piper spent the first eight weeks of her life in the NICU. During her stay she had surgery to repair a laryngeal clef among many other tests and procedures. Eventually, Piper was diagnosed with 22q11.2 deletion syndrome, the second most common chromosome disorder after down syndrome. Despite how common the syndrome is, it is still widely unrecognised due to such a huge variance in each individual with 22q. It can affect every part of the body and has over 180 possible symptoms.
Piper has spent all of her life in and out of hospital, hospital appointments and regular weekly therapy. Right now, Pipers major battles are with severe feeding difficulties which means she is fed via a tube in her stomach, hearing loss which requires her to wear a hearing aid, low muscle tone meaning she isn’t as strong as she should be and is behind her peers. Despite all of the difficulties she faces she is a very bright little girl, determined and so brave. Pipers Mum Leigh said “she brings joy to those around her and has settled in to school life really well, with amazing support from the school, Teacher Miss Colley, Education Assistant Mrs Jones and Special Needs Assistant Ms McNamara.”
Staff from Halls Head Primary School have been trained to assist Piper with feeding. Visiting Teacher of The Deaf Stewart Carter comes to assist with her hearing difficulties. Our staff love having Piper at Halls Head Primary.