anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Spinraza day 1

on May 8, 2019

This is day 1. Anna has just returned from theatre having had a general anaesthetic to receive her first dose of Spinraza (nusinersen) by lumbar puncture. She feels sick and is likely to be sore. Possibly a spinal headache.

She will repeat the procedure on days 14, 28 and 63 and then 4 monthly afterwards. Several days before each procedure we have to come in to get her bloods taken.

These are traumatic events for Anna. But it’s all worth it. Because this is the treatment that could potentially change Anna’s life. At the very least it should stop the deterioration in her strength that we see as she grows.

Scotland approved this treatment to begin April 2019 (Anna is one of the first as a result of the new agreement) as have many other countries. But shockingly it’s not yet available elsewhere in the UK

https://www.musculardystrophyuk.org/news/news/access-to-spinraza-an-update-2/

We are so grateful that Anna can have this but so disappointed for those who are not yet able to.

X


4 responses to “Spinraza day 1

  1. patmawer says:

    Great news. I hope she is not too uncomfortable.PatriciaSent from my Samsung Galaxy smartphone.

  2. Clare McAuley says:

    This is great news Ann Marie. Good Luck Anna. We look forward to hearing more updates and good news xx

  3. Hazel McKellar says:

    Well done Anna I’m getting through today and I hope the spinal pain soon goes. X

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