Throughout May and June we are donating 10% of our sales to research into Rett’s Syndrome.
Hope For Daisy
In 2017, my friend’s niece Daisy was diagnosed with Rett Syndrome, a severe genetic disorder which affects all body movements, causing loss of speech and motor skills.
Daisy appeared to develop normally in the early months. She was a happy baby and delighted her family with her mop of dark hair, inquisitive eyes, placid nature and willingness to tolerate her Uncle Kobi’s attempts at humour and Aunty Georgia’s terrible singing. But by 12 months old, it was clear to Daisy’s parents that she was not developing like other children her age. She was not meeting expected milestones such as walking and talking, and began to lose the use of her right arm. Daisy was diagnosed with Rett Syndrome at age 2.
Children with Rett Syndrome usually appear to develop normally until age 6 to 18 months. Their development then slows down or halts, and previously acquired skills (such as communication and motor skills) are lost. Individuals with Rett Syndrome are dependent on others to assist them with the activities of daily life and often experience other severe symptoms, including seizures, breathing problems, feeding difficulties, abnormal sleep patterns and spinal curvature.
Research into this rare disorder offers hope for better treatments and potentially a cure for Daisy and other children with Rett Syndrome.
You can also donate directly to Daisy’s fundraising campaign: https://give.everydayhero.com/au/hope-for-daisy