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Sadly our Daughter had Died of SMA Type 1 at Helen and Douglas House Hospice.

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Verity and I are sorry to inform you that our beautiful daughter Marianne Wendy Jane West died on Saturday 28th September at 7.20am in Helen & Douglas House Marianne was 13 weeks old that day.

She passed away very peacefully cuddled in our arms, which we are eternally grateful for.

Martin and I are absolutely devastated but also incredibly relieved that she is no longer struggling for breath.

Although she was very poorly for most of her little life, she smiled every single day and we had some amazing times with her. Happily both Verity and I were able to spend every day with her, we barely put her down.

Although this is such a difficult time we have so many happy memories to cherish and a lot of hope for the future.

After her death we took the difficult, but comforting, decision of donating her brain, spine and ovaries for research. We were then called later that day to say her tissue will be used for research into SMA, MND, Autism, Cancer and Fertility and a multitude of other genetic conditions affecting both children and adults. And it doesn’t stop there, her samples can be kept and used in research all over the world for the next 50 years. This decision has given us a great deal of comfort, pride and helped us find something positive to cling to amongst all our tragedy.

We know we have asked you to donate on previous posts to Spinal Muscular Atrophy UK.
We have raised over £3,340.00 for them which has more than paid for the sensory toys and the car seat they provided for Marianne.

However now we are switching our focus to Helen House and have set up a new Just Giving page for them below.

https://www.justgiving.com/fundraising/marianne-west

Most of you have donated before to our SMA page which is amazing, thank you. If you would like to make another donation to the Hospice this time that would also be amazing. The link is there if you wish to but there is absolutely no pressure.

We estimate that our care, in Helen House, as a family, cost £40,000 so in our lifetime we endeavour to pay that back so another family can benefit.
Sadly Douglas House was closed last year and Helen House only runs at half capacity due to reduced funds, which is just heartbreaking considering it’s such a wonderful facility and there are so many families like us in need.

Martin and I will be doing lots of fundraising for them in the future as well as volunteering there in due course. So there will be other opportunities to donate in the future. Also If anyone has any fundraising ideas and/or wants to help us raise money please message me.

Our baby daughter will always be with us and we feel privileged to have known her and to have been her parents. She gave us immeasurable joy

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 [...]

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