For as long as I can remember I have been a campaigner. From boycotting South African products while at school to marching against apartheid in University, I have always felt that it's important not just to sit and watch but to become involved and use your voice. When I became a parent of a medically complex child I was determined to use my voice to change things, to make people aware of the challenges faced by families like ours and to speak on behalf of all the families I met on my journey. This determination that by telling our story I could help educate people grew stronger when my boys were diagnosed with high functioning autism and then later on when Andy was diagnosed with and died from, cancer.
My message is always that any one of us is just a gene mutation, a car accident, a premature birth away from disability or being a carer. I tell my story to help people understand the realities of our world. From fighting for respite, helping your child through their education and just negotiating the complex world of disability and caring. And I hope that also by telling my story it will help people not take things for granted, enjoying what they have got, not what they haven't got.
We have had incredible support from so many charities and voluntary organisations on our journey. The most significant being the support we have received from the very early days from our hospice, ShootingStar-Chase. The hospice is like a second home to our family, they have been with us every step of our complicated journey, picking us up through each bombshell, here Daisy has the independence she craves as a growing girl and I have the confidence to know she will be well cared for. We have met so many inspirational families and our children in particular have received such amazing support as they have grown up with a life limited sibling. We know that our hospice will be with us at the end and then beyond as we try to pick up the pieces, just as we have seen them do with other bereaved families we have got to know. Children's hospices in the UK receive very little in terms of guaranteed, government funding. They rely solely on voluntary funding in order to provide an essential service of palliative and bereavement care and support for life limited children, this is at no cost to the tax payer or the families.
My running challenges are always focused on raising funds for ShootingStar Chase as a way of paying them back in some small way for the support they have given us over the years. I know too well that the fundraising is merely a drop in a very large ocean as more and more children rely on hospices for support. Three of my four London Marathons were run for ShootingStar Chase and I have raised around £10K for them through sponsorship.
While fundraising is helpful I know that sharing my story helps the charity to attract the big donors, I have given many talks on behalf of ShootingStar-Chase as well as the children's palliative care charity, Together for Short Lives, as I believe passionately that more funds should be allocated to supporting their very essential work.
I have spoken at the House of Lords, The Inns of Court and Department of Health as well as to local fundraising groups, at the start of races, wherever my voice can be heard! My media page lists the multiple articles and features I have been involved with over the years.
As a carer I am determined also to shine a light on what it's like to be a carer in the UK. I always maintain that I am an ordinary woman thrown into extraordinary circumstances, I never in a million years imagined that I would go from being a global marketing professional to a carer but that is the reality that could befall anyone at any time. I write about this issue and have guest posted for Carers UK as well as Mumsnet on this topic. In 2016 I was honoured (and a little embarrassed!) to be awarded a National Carers Award for being a role model for carers.
I will always use my voice and my words to help educate people on issues around disability, caring, learning disability and palliative care. I know that through sharing my story it has enlightened many people to a world they knew little about but anyone of us could inhabit at any time.
Here's some links to campaigns I have been involved in/given interviews for:
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)