For those of you that don't know our beautiful niece Helena has been diagnosed with spinal muscular atrophy, a neurological condition affecting her motor neurones which severely restricts her movement.

In the last few months there has been a very exciting development in Helena's story. For many years there was no treatment at all for SMA, but there have recently been very promising clinical trials for a drug called Nusinersen (or Spinraza) which helps increase production of the missing SMN1 protein in the neurones of an affected person and thereby prevent the cell death and increase their physical function.

We are very excited to say that Helena has been accepted into an extended access programme and has started to receive her treatment. Unfortunately, this treatment is not yet available in the UK so Charlotte and Will must travel to Paris and pay for each dose until the programme is established at Great Ormond Street in the UK (hopefully within 12 months). It is, of course, important to start Helena's treatment as early as possible in order to prevent further decline and maximise any return of function she will be able to achieve, but at a few thousand pounds per trip, the treatment does not come cheaply.

Many people who know Helena have been fundraising to help pay for Helena's treatment, and last year many of our friends and family generously helped us raise over £700 when we did the London Triathlon for Helena. In a few short weeks we are at it again, this time running the Hackney Half Marathon to help Helena continue to travel to Paris for her treatments. We would love to be able to equal or even better that amount if possible so if you are able to give anything to support us please click on the link to our just giving page.