SADLY OUR DAUGHTER IS TERMINALLY ILL. Mainly business as usual.

SADLY OUR DAUGHTER IS TERMINALLY ILL. Mainly business as usual.

Please forgive the generic nature of this message. We are sorry to let you know that Marianne, our Daughter of 7 weeks, has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a progressive life-limiting condition. Unfortunately she is unlikely to be with us for very much longer.

Mainly business will be as usual, we will priorities shipping orders over emails, calls and social media etc.. We may in fact not be able to reply to all communications during this difficult time.

We have started a Just Giving page for the Spinal Muscular Atrophy UK charity also. https://www.justgiving.com/fundraising/mariannewest

Marianne’s condition is very severe and has progressed rapidly. There has been a recent new treatment we could try, but it is not a cure, and would involve a lot of time in hospital, and painful procedures for Marianne. If it did work (and it’s a big if), it would likely only prolong Marianne’s life by a few short weeks, and this would not be the quality of life that we would want for her.

Sadly, there is no cure for Marianne’s condition, and so with the help and support of her healthcare team we are focusing on making her last days as comfortable and happy as possible.

I’m sure we can count on your support through this difficult time.

Martin & Verity

27th Aug 2019 Martin

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