Family´s Anguish As “Warrior Princess” Dies From Rare Disease
A four-year-old girl who suffered from a disease so rare it has not even been named has passed away due to her illness.
Marta – or the ‘warrior princess’, as she came to be known – died at just four years old earlier this week at her home in Vecindario, in Gran Canaria, where she lived with her parents.
The young girl suffered from a rare genetic mutation that caused her to have an 87 per cent disability and numerous complications.
She also required constant 24-hour care, which forced her mother – Cathaysa Sanchez – to quit her job and spend all her time caring for the girl.
Marta also had to be fed through a tube she was connected to 12 hours a day.
Her father, Aridany Santana, told Newsflash in an exclusive interview that doctors said they had never seen a case like Marta’s.
Aridany said: “Yes, it is true our princess had a unique rare disease in the world.
“The pathologies of this disease are: blindness, deafness, cognitive and intellectual maturation delay, hypoglycemia, hypothyroidism epilepsy, Morsier syndrome, Dumping syndrome, hypotonia, visceral hyperalgesia (pain in the internal organs) and neuropathy (pain in the nerves of the brain).”
The number of complex conditions meant the girl had to be taking ten medications a day and injected with morphine several times a day, according to local media.
The girl also required a special orthopaedic device that would allow her to move around the home.
But the home they were living her was not adapted to her needs, so Marta’s parents had to manoeuvre the device every time she wanted to move from one room to another.
The parents had applied for a specialised house adapted to her needs and spent the last three years on a waiting list.
In the end, the girl never received the home she needed.
Her grief-stricken father told Newsflash he wants to send a message to his wife Cathaysa as Marta would have written it.
The message reads: “Mum, thank you for giving me everything you could, all your love, all your care, all your warmth.
“I feel very proud of how much you fought for me, because of how you treated me day by day and how you took care of me, and how you would have continued doing it.
“I only have words of gratitude for you. I would just like to tell you that I love you and thank you for giving me life and thank you for letting me share all the beautiful moments that we live and we will live with dad and you, as I will be watching you from heaven.
“I will enjoy all the things you enjoy down there while I’m up above. Your mermaid, your angel will always take care of you.”
Aridany added: “It is as if our princess told this to her mum and I am 100 per cent sure this is what she thought of her.”