Melody had always had vomiting problems from Birth which meant she was always underweight. But apart from that she was a happy healthy baby girl up until the age of 18 months old. Then she lost all the skills she had acquired. She lost the ability to talk, her ability to walk around in her baby walker, her ability to play, to use her hands, to chew or swallow. It was as if she'd became a newborn baby again.
Melody was then diagnosed with Rett Syndrome at two years old.
The doctors gave her a nasal feeding tube down to her Stomach to feed her but she constantly vomited, so then the doctors tried a nasal tube that went down to her intestines but melody continued to vomit.
So the the doctors fitted a permanent feeding tune in her stomach to her intestines but still she continued to vomit. Melody then started adobe rating on the vomiting so she had a Nissans-Fundoplication done (stomach stitched) so she couldn't physically vomit anymore but that just turned the problem to constant diarrea.
When she was 3 years old Melody's gut completely failed and she had to go onto TPN because any feed or medication through the gut causes severe pain.
Melody has to have Keyamine injections(horse sedation) to cover the pain that medications bring. Since then Melody has been in and out of hospital constantly for 3 years due to line infections from TPN,
TPN is keeping her alive but it eventually results in Liver Failure. And any of th line infections could take her from me.
Rett Sybdrome has also caused melody to have scoliosis, kyphosis,seizures,weak bones (she's had 4 fractures in the last year)
Melody is now 6 and has been in great Ormond street hospital for the last 6 weeks, she is now internally bleeding and has an undiagnosed inflammatory diseas.
She is black and blue and her whole body is swollen. We are currently waiting for an operation to remove Melody's Colon due to the inflammatory disease and internal bleeding. This is currently making her very poorly.
I have to witness melody in pain every single day and it breaks my heart. But she is living proof that there is always Hope.