Nellie Sunshine ☀️

 

 

 

 

On the 11th December 2019 an angel was born, Nellie Sunshine. But this is not my story to tell, I am merely a narrator in the story of Nellie Sunshine. A girl who beams rays of pure magic into this world, she is the an angel on earth, here to teach us so many things, gratitude, positivity, to lead a humble life, look for the magic that is in front of us, roll in the grass, laugh at the clouds, find joy in every day. Nellie was born to Tom and Megan. Parents who knew when she was born that she was sent to us to change the world.

 

Skip forward to the 17th April 2022 Their world was turn upside down, Nellie’s proteins in her blood are attacking her brain and damaging her white matter. Without an exact diagnosis, they have been left in crippling fear, but everyday finding absolute joy is Nellie’s effort, determination, her joy to be living. Her smile fills your heart with overwhelming love. Nellie can’t walk, but she CAN and will get where she wants to go, believe me. She will say so proudly ‘ I DID IT’ the words of a warrior, fighting every minute of every day. Some days are hard, some days Nellie is too exhausted to show her light to the world, she keeps it at home cuddled up between her Mum and Dad, she saves just enough to give them hope.

 

Thursday 12th May 2022 their worst possible fear was confirmed. Nellie was diagnosed with infantile MLD and given a life expectancy of 3 years. 3 years... how can you even begin to process being told; your sunshine was going to be taken from you, somewhere, where you can not go with her. There is no cure, Nellie and her parents have been put in touch with palliative care.

 

Every day that passes, Nellie will deteriorate. Time is precious. Every minute counts. What I beg now is please, please find it in your heart to come together and give them something to enjoy their time with Nellie. Time where Nellie can enjoy and find joy in days out, time spent in their family cottage get away with Grandparents.

 

This may be the last summer Nellie can understand and love seeing the farm animals, watching the fish, meeting her favourite characters like Peppa Pig, trips away with her family, weekends embraced in a secret cottage with her Grandparents, private medical care to help ease her pain. Megan is too humble to ask for help. So here I am, desperately asking us to all raise money, for Tom and Megan to spend on what ever they feel is best to enjoy the precious time they have with Nellie. Relieve some financial burden of the cost of making memories, big or small.

 

'Our hearts were opened the day she was born and so the break feels all the more painful but I am so grateful I was chosen to be her Mummy. I intend to make every day of the rest of her life count and I will find her again in the next life of this I am sure.’ I cannot tell you the admiration I have for Megan, her strength, courage and bravery. I can’t express how having Nellie in your life can change your whole outlook in a second. All our hearts are breaking, I cannot begin to understand the indescribable pain Tom and Megan must feel, but they still hold her tight in their arms, so grateful for the time they have been given.

 

I read the words of her Aunty which moved my soul ‘I wish I could carry your pain with you. Instead I will try to hold the light when days are dark. So when the sunshine tires and when your hearts feel too heavy. There is a space where you can rest. For people who love you will hold a place where you can lay your heart and shed your tears. To come back to the sun, and breathe and sing and live, to make this little life shine.’

 

Let us hold a light in our hearts for this family, who face the worse fears any parent could. When you see the sunshine think of Nellie. Please follow her journey @meganpg11 and fall in love with a girl who is happy to be living life, while she still has time.