Alexandra’s Story
“Beams is an excellent charity and really excels giving families as much support including the respite at Dragon’s Retreat. We are extremely grateful to be joining this family and hope to connect more with other parents too. Thank you all so much for your empathy and hard work we appreciate it!” Alexandra’s mum, Cassandra
Alexandra is joyful, loving and sociable 10-year-old girl who brightens the lives of those around her. She has Weidemann Steiner Syndrome, a rare genetic condition with only 1500 diagnosed worldwide. Alexandra’s case is severe, with challenges like being non-verbal, unable to walk independently, and having poor muscle strength and tone. She also has hypertonia, hypermobility, generalized epilepsy, now controlled with medication, and type two Chiari Malformation.
Early in life, she struggled with “failure to thrive” due to nutrient absorption issues, a posterior tongue-tie, severe reflux, and constipation, which continue to affect her. Alexandra also has poor dexterity, is incontinent, and struggles with using a communication system.
Alexandra needs full time care, she does not sleep very much as has difficulty staying asleep and falling asleep. She has started biting and harming herself at night because she is frustrated. The lack of sleep is one of the biggest challenges for the family with Alexandra often only sleeping for a couple of hours each night. Over time, this has caused mental and physical exhaustion for her parents and burn out for her mother Cassandra. Whilst the family receive a few hours support from their local council, this is not enough.
Despite the many struggles she faces, Alexandra is a beautiful and loving child; she lives in the present, which helps her parents to do the same. She enjoys music, and dancing, she loves water and gets so much enjoyment as she learns to swim. Her great sense of humour and contagious laugh bring so much joy to her family!
With so few children having the same syndrome as Alexandra, it has been hard for her parents to find other families facing similar challenges and prognosis for the future. The lack of support and resources in their local area has been especially tough and the family feel very isolated.
However, discovering We Are Beams has been a lifeline. Beams’ accessible hydrotherapy swimming sessions provide Alexandra with a therapeutic outlet—warm water soothes her painful joints and muscles while allowing her to build strength and confidence. Public Swimming pools are too cold, loud and do not have good changing facilities, this all leads to Alexandra having autistic meltdowns.
Beams short breaks activities has helped alleviate some of the loneliness Alexandra feels, especially during the holidays. The ability to interact with other children has given her a sense of belonging, which is invaluable for her development and well-being. These short breaks have also given her parents much-needed time to recharge.
Recently, Alexandra’s mum, Cassandra, has joined Beams’ Parent Support Group, giving her the opportunity to connect with other families facing similar challenges. Having a network of support has helped her navigate the complexities of raising a child with a disability and given her hope for the future.
Alexandra’s parents unwavering love and commitment reflect their resilience and strength as a family. Despite the daily challenges, they cherish the little moments of joy, knowing that with support from Beams, they are never alone.
Photos of Alexandra and her family at We Are Beams.
