Raising money for Secondary breast cancer and SMA

Hello, my name is Sandra and I am growing my hair long to be cut off and made into a wig. I am raising money for two very special charities close to my heart, Secondary 1st breast cancer and the Children’s Hospice South West.

The first charity is for my friend Poppy. Poppy was an amazing person, always smiling and a genuine, kind soul. I was asked to help Poppy around her house just for 3 months whilst she recovered from breast surgery. Sadly, she got the news that it had spread. So, I stayed and got to know a very special person. She came downstairs one day without her wig on, and I said to her, “you’ve come down naked, put your wig on ha-ha”, we both laughed. She told me that she would have loved to have had my hair for a wig, unfortunately, we never got the chance. This is where my inspiration to cut my hair off and donate it to be made into a wig came from. Poppy passed away in January 2019. This is for you my beautiful friend. Currently there is no cure for secondary breast cancer but this charity funds vital research that is seeking a cure. Anything you can donate will continue to aid this charity to help others like Poppy.

The second charity I am raising money for is inspired by my Grandson who was diagnosed with SMA. Below is his story written by his father.

We found out about our son’s diagnosis of Spinal Muscular Atrophy (SMA) a week before Christmas 2020. We knew nothing about the condition, except that it was bad. We were told they were doing a test for it, but that we shouldn’t ‘google’ it before it was certain. And then when it was confirmed, we discovered just what it might mean. It was an incurable genetic disease. Basically, the gene which helped protect the muscles wasn’t there, and without that, muscles would degenerate. As such breathing would become harder, swallowing too. Up until fairly recently, children with this condition would not live past 18 months, 2 years maximum.

There was treatment though, not a cure, but treatment that could well hold back the wasting effects of the disease. We would be sent to Bristol Children’s Hospital the very next day to start the ball rolling and to find out more. There we discovered there was another treatment on the horizon that could have even greater effect in saving our son’s life, but it hadn’t been approved in this country. And it was astronomically expensive. At this stage we couldn’t really dare to dream.

In the midst of all this shock and pain, the palliative care team mentioned the Children’s Hospice South West (CHSW). I knew of them a little as my dad had done some fund raising in the early days when they were building their units in Cornwall, Devon and Somerset. I like many others I‘m sure had always assumed that the Hospices were only for end of life care. But we were mistaken. They were there also to support the families of very ill children with complex clinical needs. And not just the parents and the child but the siblings also. In fact, they have a dedicated siblings team to do just that. The emotion I feel as I write this is palpable. Their generosity and skill are immense, and their facilities and grounds are fabulous. We’ve had a couple of brief day visits (our daughters particularly enjoying the big bubbly pool!) and a couple of ‘resilience’ stays. Being hosted, being catered for, the kids being entertained (with gentle play therapy intertwined), our son being nursed, us being given a space to talk, walk, cry and laugh – all these things have made this incredibly challenging journey so much more bearable. And when we had to take our son to Intensive Care in Bristol and stay with him for 2 months, the regular caring phone calls from CHSW and the chance to bring our daughters up to stay in the local Somerset hospice to be closer to us, these things helped us hugely. This is a charity, and it needs constant support. And whilst their resources are finite, they make you feel like their support for you has no bounds. Please support them by giving what you can.

Thank you for reading and helping me raise money for two incredible charities. It means the world to me.