Last week a post popped up on my Facebook newsfeed from a lady called Demet Taylor requesting breast milk for her baby daughter, Melina who is terminally ill with SMA1 (Spinal Muscular Atrophy Type 1). In the post, she shared the Melina Little Mermaid page she had set up for her baby and to help raise awareness of SMA1
I started reading about Melina and the journey that her mother, Demet and family have been through and I was absolutely in awe at the strength, positivity and sheer resilience of this woman, not to mention her love and devotion to her beautiful little girl Melina.
Every year, as part of our Mother’s Day celebration of all mothers, we nominate one mother as the “Inspiring Mother of the Year” and this year we have chosen Demet. Ask any other mother and I’m sure we would all agree that the love we feel for our children is indescribable and even the mere thought of anything happening to our child is unbearable.
Demet and her husband, Hugh, are living that reality in its most extreme form. At eight weeks, Melina was diagnosed with SMA1, a genetic muscular disease that is sadly, terminal. Most babies do not survive beyond two years and 80% die by the age of one. Melina is now just over 6 months. She spends most of her life with her parents at Helen’s House Hospice in Oxfordshire. She cannot move, has to be fed through a naso-gastric tube and has to breathe through a respirator. She cannot do anything and is completely reliant on her parents for everything. Yet she is the most beautiful little girl with the kindest eyes and a gorgeous smile that makes your heart melt.
But despite the severity of Melina’s illness, Demet is truly inspirational and her positive outlook and her resolve to never give up hope is what makes her and mothers so amazing.
The sacrifices (that don’t even feel like sacrifices), the sleepless nights, the wishes, hopes and dreams that you cradle for your children and the endless love that drives you, knowing there is nothing you would not do for your child. That is motherhood.
I wanted to share Demet’s words from one of her posts that will give you an insight just how incredible she is and why we have nominated Demet as our ‘Inspiring Mother of the Year.’
“Although she can’t move and can’t speak, grab your hair or jump into your arms or bite your nose, the deep look she gives you when she looks at you is enough to make your heart burst full of love. She does not only need me to do everything for her. I need her so much more. She is my strong side. I love her so much and I am the proudest mummy to have such a brave fighting and kind-hearted daughter with her beautiful auburn-coloured hair and her cheeky smile. Melina is a gift.”
Those words are so humbling and you can simply feel the love. Love is what motherhood is about and today we celebrate each and every one of you and the love that you give to all your babies big and small.
Love is also what produces miracles and we continue to hope and pray for a miracle for Melina Little Mermaid.
At Demet’s request we have made a £200 donation to SMA Support UK, a charity organisation, which provides information and support to those families and individuals affected by SMA. To find out more information visit: http://www.smasupportuk.org.uk
To support Demet’s mission to raise awareness regarding SMA1 we have put together this page that provides an overview of the condition. Please click here to read more about SMA1.