Meet Mila
Mila is a 5-year-old girl from London with a rare genetic condition called SCN2A-related developmental and epileptic encephalopathy.
As a baby, Mila’s development was delayed and, at just 10 months old, she developed Infantile Spasms. What followed were months of hospital admissions, countless tests, multiple medications and frequent ambulance journeys. At her worst, Mila was having up to 100 seizures a day and was admitted to Paediatric Intensive Care.
Eventually, Mila was diagnosed with an SCN2A-related disorder, a rare genetic condition that affects brain development, movement, communication and learning. There is currently no cure.
Our Journey
Mila’s seizures continued despite multiple medications and she was later diagnosed with drug-resistant epilepsy. She was transferred to Great Ormond Street Hospital and started on the ketogenic diet.
As parents, we refused to accept that there was nothing more we could do to help our daughter. We began researching additional ways to support her development and discovered Doman International, a specialist organisation that creates individualised developmental programmes for children with neurological challenges.
Since then, Mila has been assessed every six months in Italy and follows a daily programme at home designed to support her health, development, mobility, communication and learning.
Where Mila Is Today
We are incredibly proud of how far Mila has come.
Mila has been seizure-free for more than three and a half years, has not required a hospital admission for almost four years, and no longer takes anti-seizure medication.
Over the years, she has worked incredibly hard to regain skills that were lost during her epilepsy journey and continues to make progress every day.
Mila can sit independently, crawl, kneel up at furniture, stand with support, use her hands to pick up objects and play with toys, and is continuing to make progress with her mobility.
Her vision and hearing have also improved significantly since her early years.
One of our biggest focuses is communication. Mila is learning to communicate through AAC (Augmentative and Alternative Communication), and we are currently exploring communication devices and assistive technology to help her express herself, make choices and access learning.
Mila spends her days taking part in therapies, communication activities, learning opportunities and family adventures that support her health, development and future independence.
While Mila still faces significant challenges, she continues to show us that she can learn, develop and make progress when given the right opportunities and support.
What We Are Fundraising For
Funds raised help Mila access specialist programmes, assessments and therapies that support her health, development, communication and independence.
Every donation, fundraiser and share helps us continue giving Mila opportunities to learn, grow and reach her potential.
Looking Ahead
Our goals for Mila are simple: to help her communicate, learn, become as independent as possible and live a happy, fulfilling life.
Thank you for taking the time to read Mila’s story and for supporting our family.
