After the tragic loss of her daughter earlier this year, Emma decided to do something positive in memory of her beautiful Amber, and thus Mito Rocks 19 was created. Here, Emma tells us a little about Amber, her personality, and how Amber inspired her to create a simple, fun and effective activity to help raise awareness for mitochondrial diseases, and help to keep Amber’s legacy alive.
Our little girl Amber was just 8 years old when she passed away in April 2019. She fought long and hard against Leigh syndrome; it took so much away from her over the years. She was only 3 when she was diagnosed and the disease had already taken its hold with her not being able to talk more than a few words and her muscles being so weak that she had at that age only just learnt to walk! By the age of five she lost the ability to walk and became a full time wheelchair user but nothing this disease threw at her stopped her love of life and her smile was always so bright, her giggle was infectious and we often spent periods of time in fits of giggles. She loved so many things in life: music, toys, nature and arts and crafts. She was extremely strong willed and was not one to give up easily, even when she lost the use of her hands she still wanted to remain independent and try to do things for herself, so we had to put our thinking caps on daily to try and make this happen.
As a family Amber taught us so much. She taught us to be strong, she taught us to treasure the small things in life and to take life a day at a time. Even though we knew that her condition was life limiting and one day we would lose her, when she did pass away it still came as a huge shock and has turned our world upside down; we miss her every second of every day! Especially her brother. He has Autism and would do things with/for Amber that he wouldn’t do for anyone. They loved their hugs together and he misses her dearly; he struggles to express his feelings and how he feels about his sister being gone forever but talking and laughing together about our time with Amber helps us all.
I wanted to continue to raise awareness in Amber’s name and make sure her battle with this horrid disease had meaning. So I came up with the idea because of her love of painting to start a group called Mito Rocks 19. It’s a group where people come together to paint and hide rocks to raise awareness of all types of mitochondrial disease. The aim of the group is to get as many people as possible painting rocks and hiding them with the group name written on the back instructing people to let us know they have found a rock and where! Whilst on the group we have posts about mitochondrial disease and even pictures of mito warriors lost, or still fighting, so people can see why we are fighting for awareness! If you’d like to join our group you can find us here.
By Amber’s mummy, Emma