Sacha is on the front page of the Argus today, as we count down to the final deadline of our crowdfunder.
A few details are wrong, such as a caption on the photo of NAPA physiotherapist Erin working with Sacha which identifies her as Sacha’s mum!
If it had been up to us we would have told the story differently. For us what is “newsworthy” about Sacha’s case is:
- he has a very large chromosomal deletion (6mb—million base pairs—of DNA) in a region where deletions are closely associated with disabilities. Yet he is doing surprisingly well considering (even kids with smaller deletions would normally be expected to do worse), and this is likely in large part due to the intensive therapy he has had.
- the community fundraising has been extraordinary, and it has been a very moving experience for us to find such warmth and support. In particular, Jackie Chase who runs Under the Bridge Music Studios, and does the popular baby music groups there, has been an absolute hero in getting us going with the fundraising in the first place, as well as contributing a lot of effort to organising events, collecting, mobilising support etc. She really deserves recognition as a pillar of the community in Brighton, helping out parents and kids in need etc.
But it is of course great to get this publicity from the Argus, a local paper of which I am very fond, largely for its Onion-esque headlines.