Campaign by Story
Meet Mila, our beautiful, determined and endlessly happy two-year-old little girl.
At 18 months, Mila was diagnosed with SATB2-associated syndrome, an extremely rare genetic condition severely affecting her development, movement and speech. There are only 750 recorded cases worldwide.
We were told our little girl may never walk or talk. We are heartbroken.
Mila has severe speech delay, hypotonia and finds motor planning particularly difficult. Her understanding, however, continues to grow.
Importantly, SATB2 is not degenerative or regressive. It will affect the pace of Mila’s development, but she is expected to continue learning and gaining skills throughout her life. It is so rare that there isn’t enough long-term evidence to tell us what Mila’s developmental ceiling will be — and we refuse to define one for her.
Therapy is advised, and Mila keeps showing us what she can and wants to do. With determination and months of therapy, she learnt to sit independently and is now working on crawling, standing and, we hope, walking.
Milestones that come naturally to many children can take Mila hundreds of repetitions. But she learns, and that gives us so much hope.
Through Milestones for Mila, we are raising funds for specialist neurological physiotherapy, Speech and Language Therapy, Occupational Therapy, AAC and communication support, intensive programmes such as NAPA, and specialist therapeutic and mobility equipment.
Early childhood is a crucial period for brain development and neuroplasticity, so we want to give Mila every opportunity now.
This isn’t about changing who Mila is. It’s about giving her every opportunity to show us who she can become.
We don’t know where Mila’s journey will take her. We just don’t want lack of access to therapy or support to determine how far she can go.
Thank you for reading Mila’s story, supporting her and helping us give her every opportunity to reach her potential. It means so much to our family.
Claire, Alex, Alfie & Mila x