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These words have been written by Faith before her daughter's 18th birthday.
Sophie is approaching her 18th birthday; a milestone in so many ways.

As I write this, we are navigating an extremely complicated transition from children's services to adults'. Sophie is approaching her 18th birthday; a milestone in so many ways.


When Sophie was just 18 months old, her paediatrician came to our house to break the news that she had a severe form of Rett Syndrome, a complex neurological condition that would most likely leave Sophie a husk of her former self. That little girl who had once crawled, babbled a few words, sat up, and fed herself, had slowly been losing all those skills. She would become locked in a body with no independent movement; twisted with a severe scoliosis; wracked with seizures, abnormal movements and pain from flexed joints and numerous internal issues; with no speech or purposeful hand use, but completely aware of the world around her nonetheless.

We asked the paediatrician if she would live to adulthood. "She might do", was the response.

So we have lived the last 18 years preparing ourselves for the worst. We have been cared for by so many wonderful palliative teams, both at the children's hospital and in the community. Not least Charlton Farm. One of the first families through the doors when they opened 14 years ago, we have been regular visitors there ever since. And slowly, with each new development in her condition, we have tried to adapt to not having our precious daughter with us for very long.

So as you can imagine, Sophie's 18th birthday will be a cause for huge celebrations. And it will be tinged with a little sadness that the support network around us will slowly drop away as we face the world of somewhat patchy adult provision. To mark the auspicious occasion of Sophie officially becoming an adult, we have decided to collect donations for Children's Hospice South West in order to give back just a fraction of what they have given Sophie through the years, so that they will be able to support younger children on their journeys.