Told by Sabrina’s mum, Louise
Sabrina was born a healthy baby in 2014, fitting into family life well. At 12 weeks we noticed eye flickering when putting Sabrina down, thinking it was her startle reflex we kept an eye on it. This turned out to be Epilepsy and started a long road of tests.
After being bumped around the medical system without answers for four years, Sabrina was diagnosis with ALG1 CDG, a rare metabolic disease. She was the 19th person diagnosed worldwide – there are now 65.
Sabrina wasn’t meeting the usual milestones and was diagnosed with Global Development Delay (GDD). Physio, occupational, speech and language and hydro therapy, gratefully received from the NHS, became our life and walking became the goal.
Through grit and determination Sabrina took her first tentative steps at four, one week before our wedding. Our dreams came true, our little girl could walk! We quickly realised this was another beginning, one more dangerous than when she was limited to sitting.
We needed to focus on Sabrina’s motor skills, coordination, and balance and strongly feel that these early years of Sabrina’s development are crucial to her living as independently as possible in the future. Naturally, wanting to support our little girl’s development further, we found Brainwave.
We see a Physiotherapist, Speech and Language Therapist and Sensory Integration Therapist under one roof. We are given exercises, and games specifically for Sabrina, which are reviewed and adjusted every six months.
We have seen progress in ALL areas of Sabrina’s development since our first visit in 2020. When walking she maintains better balance, stability and endurance (we were shown an invaluable technique which slows Sabrina down so she can plan her next movement, instead of running head first into things). Sabrina’s concentration has lengthened, her speech and language has improved and she uses around 100 words regularly. Sabrina’s fine motor skills and control have developed, allowing her to feed herself with a fork and brush her teeth.
Brainwave has given us the knowledge and confidence to be active in Sabrina’s development. Because her diagnosis is rare, her doctors can’t say what the outcomes will be and so knowing that we are doing everything we can to support her to reach her potential, whatever that may be, helps us sleep at night.
We hope that Sabrina continues to learn each day and never loses her zest for life. We will continue to raise awareness of
ALG1-CDG through ‘Sabrina’s World’ on social media, which offers a window into our special little girl’s life, giving hope to others. We hope the world becomes more inclusive, so Sabrina and her friends don’t have to ‘fit in’.
I can’t recommend Brainwave enough; it is a wonderful support to us and we would recommend sharing the Programme with professionals supporting your child. We share it with teachers and therapists and believe working together is essential for the best outcomes. We don’t have to do this alone.