Albert

Let me introduce you to our incredible son, Albert – the inspiration behind our involvement with AGO Alliance and the creation of AGO Alliance Poland.

Today, on 31 January 2024, Albert is 6 years and 3 months old. He lives with Ago1-syndrome and autism, which have shaped many aspects of his life. Albert faces intellectual and learning disabilities that affect his daily experiences, along with feeding challenges and epileptic changes. Intellectually, he functions at about 18 months old, with limited speech comprehension (he probably understands around 100 words) and significant learning difficulties. His developmental progress requires continuous work on tasks designed for children aged 6 to 18 months.

Albert is non-verbal, and we are currently in our third attempt to introduce alternative communication (AAC) since his second birthday. Helping him communicate is our biggest priority right now – it’s a journey, but one we hope will allow him to express himself and connect with the world around him.

Albert began therapy shortly after his autism diagnosis at 13 months. Initially, he attended occupational therapy and physiotherapy for three hours weekly. As our knowledge grew, we expanded his therapies to meet the American recommendations of 20 hours per week by the age of three. Over the years, we’ve explored various approaches, including Bobath and Vojta physiotherapy, ABA, ESDM, Johansen hearing training, horseback riding, swimming, art therapy, music therapy, and more. These therapies have been part of both his preschool experience and beyond.

As I write this, Albert is pulling me toward the swing in our living room – his way of letting me know what he wants. He’s found his own methods to communicate his basic needs, whether it’s bringing us toys, guiding us to what interests him, or simply pulling us toward something. His emotions are clear – he cries and laughs – but we don’t always know the reasons behind them. Helping him develop alternative communication is critical so that we can understand him better and enable others to do the same.

Albert has two younger siblings, aged 5 and 1, who simply see him as their brother. To them, his unique behaviors aren’t strange – they’re just part of who Albert is.

Albert’s feeding challenges, which required a feeding tube and years of food training, are another chapter of his story, one I’ll share separately. Due to his Ago1 diagnosis, we closely monitor his health with bi-annual EEGs, as some children develop epilepsy between the ages of 3 and 5. At 5, Albert started showing epileptic changes in his EEG, leading to treatment with Levetiracetam.

Each day, we face a choice: focus on the challenges that come with his ultra-rare genetic condition or celebrate his achievements and joys. We choose the latter.

Albert loves playing chase, being outdoors, swimming, swinging, pressing buttons on his musical toys, and listening to children’s songs. He is a smiley, cheerful child who is blissfully unaware of society’s expectations.

Every day, we choose to accept and support him, helping him grow and thrive. We also work to improve his quality of life by raising awareness about rare diseases, autism, and advocating for drug repurposing research and therapies for him and others living with Argonaute Syndrome.

Albert teaches us to appreciate the small joys and moments of connection. Through him, we’ve learned to embrace what is truly important.