I hope that you don’t mind me contacting you like this, In fact, I am guessing at your e-mail address – so may not be finding you at all!
Many years ago, I was in contact with you and started my daughter - then probably about 9 - on GSH, after reading about your experiences and research. After having to change computers and moving back to fulltime work, I lost contact with the group and didn’t renew it, so have no idea what has been going on recently in the world of GSH research and cystic fibrosis.
However, I would like to let you know that my daughter is now nearly 21 and is at university herself. In fact she is taking a year abroad – in the south of France. She hasn’t had contact with a doctor or hospital for the whole time she has been there – and very fortunately has not needed it. Prior to being away, doctor’s appointments have been no more than check ups – she has had no medical interventions or changes to her daily routine for several years. The only medical contact we have at the moment is when we pick up her prescriptions and then work out how we are going to get them to her with the minimum of expense. (Heavy cases up and down the Paris metro and on and off trains for my husband and myself – a small price to pay for a ‘normal’ well daughter with Cf!) Going away, as any other student would do, is something that a few years ago – in fact pre GSH, I could never have hoped for her. She is now used to living a nearly normal life. I, of course, still remember how she was before GSH and am so aware of how she has been given such a wonderful chance of living as any other person for at least this much of her life – I daren’t hope for too much, but the miracle hasn’t stopped yet.
I am extremely grateful to you for the work that you have done and so glad that I came across you in my internet searches. I often think of you and wonder how you and your children are coping and hope that you and they are also benefiting from the fantastic improvements that GSH brings. I know that my daughter owes her continuing good health to GSH and you, for working at finding it.