Soren's quilt    (Quilt Completed)

Thank you

Sorry for the delay in getting a photograph to you. We are home from hospital now. Thank you to each and every person who contributed. This is so beautiful and perfectly matched to everything that he loves. We will always treasure it.

Finished photos

Individual squares

Card

Stitched by: Nicola Bailey

Biography

Soren experienced chronic breathing difficulties and low tone at birth. He was also found to have swallowing difficulties, dramatic and sudden drops in oxygen and airway difficulties known as laryngomalacia. An ultrasound in neonatal discovered a significant malformation in the corpus callosum of his brain. Soren also had an enlarged liver and spleen as well as low tone and weakness in his muscles. He also began to have intermittent episodes of high tone in his muscles known as dystonia.

He experienced poor health and frequent chest infections as a baby and also went on to develop epileptic seizures at approximately 11 months old, known as infantile spasm (West Syndrome). This resulted in a loss of development and seizures that would stop him breathing. At around 17 months he went on to have serious breathing difficulties that led to acute infection and emergency ventilation. During this acute infection he lost part of his bowel during life saving surgery and now has an ileostomy and uses a stoma bag.

In October 2022 genetics discovered that Soren has a very rare variation on KLF7 gene. Soren is one of five children in the world documented as having this.

Soren is now 8. He continues to experience complex medical and neuro-developmental difficulties as well as high risk episodes of airway dystonia. He is a happy and joyful child and loves music.