Hi. My daughter has this condition and is doing well but was wondering if anyone else who has this condition could answer a few questions. She was born with high muscle tone. Now she is walking and running around the place but her balance is poor and she falls over constantly. Will this improve as she gets older or is it always a problem?
She is also very very pale with no colour in her face and her vains are visible around her eyes? Again is this part of the condition and does that change with age.
Finally when doctors say she will be small when fully grown. How small is small?