My lovely DGD age 12 has multiple disabilities.
She can not see beyond 6/8 inches, she has severe epilepsy, cerebral palsy, learning difficulties. Its getting worse not better as she gets older, the epileptic fits very 2 hours mean she is exhausted all the time (not to mention parents, 4 children) and so her learning disabilities get worse and willingness to move around (crawl). In Covid she had to be intubated for 4 days the worst days ~I can recall but it was precautionary as it turned out. But it made me feel, "take me, take me", its not right.
She is a happy soul and sings along to her favourite songs and carries around a yellow shark (protection?)
But today Dad and L set out on the train (she loves trains) to go to Great Ormund Street H to see if she can take part in a trial. this small and fairly safe brain operation would take away 90% of the epilepsy - and give her the chance to be less tired and more mobile and improved learning abilities.
Prayers, and warm thoughts most welcome.
