This time five years ago I was sitting on a hospital ward with Graham waiting to hear news of Star who was in the operating theatre. This was the beginning of the end of an eighteen month journey which started when Star woke up one morning with a wonky neck. We took her to the…
marfan syndrome
The Long and ‘Tall’ of it, Marfan Syndrome
We had a visit to the geneticist last week. It had been 18 months since Star had screamed the place down while they took her blood for testing. Thankfully long enough for Star not to be too anxious about her last visit. We had a letter some six months after her last visit saying that…
Elhers Danlos Syndrome Awareness Month.
At the top of my page you may notice a tab called My Little Zebra, if you click it you will be taken to a new blog all about my little girl who has Elhers Danlos Syndrome. As it is EDS awareness month I’m going to share her story here, only a little more condensed….
