Rett Syndrome
Rett Syndrome is caused by genetic mutations and can progressively worsen over time as it affects the way the brain develops. Children with Rett syndrome commonly lose milestone abilities they’ve gained before 18 months and experience slowed growth, loss of movement and coordination, breathing challenges, feeding and swallowing difficulties, while maintaining some cognitive abilities.
Rett Syndrome is a lifelong condition, and most treatments work toward comfort and maintaining abilities and function. Brades’ Place prioritizes in-home therapies with a vision towards long-term involvement. Speech therapy opens doors to communication devices such as eye gaze devices to empower existing abilities to communicate in unique ways. Brades’ Place empowers the medical team’s commitment to patient safety with support and equipment to address airway safety, swallowing, positioning. Brades’ Place involves child life specialists to focus on the patient’s individual personality, likes, and dislikes alongside their siblings and peers.
Body Systems Impacted
Resources
Courageous Parent Network
The Courageous Parent Network is a fantastic resource for families with medically complex children, including Rett Syndrome. They have a lovely interview with a mother about finding support for herself and her daughter with Rett syndrome.
They have a comprehensive assortment of guides available, helping parents navigate the unique challenges associated with raising a child with life long illness.
International Rett Syndrome Foundation
The IRSF is dedicated to advancing research into the cause and treatment of Rett Syndrome, as well as empowering families to live healthily and happily with the disorder.
They provide information about new diagnoses, Living with Rett, and finding clinics that are specially equipped to work with Rett syndrome.