Thanks for taking the time to visit Marianne's JustGiving page and for your support.

Marianne had Spinal Muscular Atrophy (SMA) Type 1, a rare, progressive life-limiting condition. Unfortunately she died at 13 weeks old in September 2019.

Marianne’s condition was very severe and progressed rapidly. Sadly, there was no cure for her condition. With the help and support of her healthcare team we focused on making her last days as comfortable and happy as possible.

Helen House Hospice played an important role in this. Caring for her for the last 13 days- day and night- making sure she was comfortable and happy. The team continued to care for us for 5 more days after she passed.

Helen House took all the responsibility for her medical care and looked after all of us so well. This meant we could just focus on being parents and enjoy our time with Marianne. We made some wonderful memories there. 

In our lifetime we aim to, with various events, raise enough money to pay back the cost of looking after us as a family- estimated at between £40,000 and £50,000. So that another family may benefit in the future.

Our hearts are broken but we hope that something good can come out of our tragedy.  Please give your support to help Helen House support families and children with severe, life limiting conditions. 

Thank you very much

Martin and Verity West