For Leukodystrophy Awareness Month we hear from Catrin, whose daughter has Metachromatic Leukodystrophy (MLD).
My daughter Eva Rae Howells was diagnosed with this horrible life limiting disease at only 2 years old. Eva was a happy healthy baby until the age of 18 months from then on she lost the ability to walk or sit independently. We rushed for help in hopes that a little physio would be all she needed. She was sent for various tests and an MRI scan. On the 6th June 2023 we had the most devastating news that she had Metachromatic Leukodystrophy (MLD).
From this date Eva is totally dependant on me and her dad for support, she is non verbal and she has recently been put on a ng feeding tube.
There are a few treatments available but unfortunately Eva was not eligible for any of them because the symptoms had already started which shattered our family completely.
With the support of palliative care, physios, occupational therapies etc it's taken the ease of worrying about day to day life and just taking care of our precious daughter and giving her the life she should have and making memories that will stay with us forever.
MPS society was the best place to start on this journey and reading other family stories.
Catrin x
If you would like to know more information about MLD please click here.
