Giveaway

Giveaway #103 Sensory equipment for son with Angelman Syndrome (AS)

By June 4, 2024No Comments

Evening friends, here is news of our 103rd donation, nominated by our member Monica McAlindon:

Charlotte, a dedicated mental health nurse, resides in Derbyshire and has tirelessly served the residents of Derby and Derbyshire. As a single mother, (who is also completing additional studies) she lovingly cares for her two remarkable children, Archer and Ezra. Charlotte has built a local network as her family do not live locally and her dad lives in Australia so is reliant on the community around her.

Archer, the elder of the two, faces the challenges of Angelman Syndrome (AS), a rare neurological disorder affecting approximately 1 in 20,000 births. The condition manifests with delayed development, severe learning difficulties, limited or absent speech, and issues related to movement and balance. Despite these hurdles, individuals with Angelman Syndrome have a normal life expectancy, but they require ongoing support throughout their lives.

Archer’s daily journey involves extra medication to manage seizures and promote restful sleep. Additionally, he needs physiotherapy to enhance posture, balance, and walking abilities, crucial for preventing joint stiffness as he grows older. Communication therapy plays a pivotal role in developing non-verbal language skills, including sign language and visual aids. Innovative tools like iPad applications facilitate communication. Some pieces of equipment in a dedicated room at home which could offer immersive experiences or require relatively passive engagement, such as room lights, soothing music, or watching a bubble tube would make a huge difference to his life. Other equipment will encourage more active engagement, such as touch-sensitive panels that activate lights and sounds or textured surfaces. A sensory room will not only enhance Archer’s well-being but also support the management of his care, providing him with the chance to thrive. However, creating such a space represents a significant additional expense—one that Charlotte cannot achieve without support. Your consideration of this nomination could make a life-changing impact for the family.

Friends I have spoken with Charlotte, this is her real name and she’s waived anonymity in the hope of sharing awareness of Angelman Syndrome (AS). Archer is not mobile, he has seizures, his favorite place is at school as they have a sensory room, having something similar at home would help the whole family. Despite his challenges Archer is a very happy child, he is constantly smiling and the staff at his school love working with him. Charlotte was delighted on the news of our donation, sends her very grateful thanks and has promised pictures of the equipment they purchase.

Well done everyone!