Our first child, Logan, was born with an extremely rare genetic disease, Type 1 GM1 Gangliosidosis, for which there is no cure. Sadly, Logan passed quietly away in May 2008 at home with us at the age of just 20 months.
During Logan’s illness, we were lucky enough to be introduced to a wonderful Danish Biotherapist, Charlotte Jakobson, who treated Logan and helped him a great deal with his symptoms. This allowed him to sleep for longer, removed his seizures, allowed him to eat without having to have a gastrostomy, to breathe unassisted and to remain free of infection and medication. This meant that the quality of his short life was vastly improved. We were able to walk in the woods with him, to go shopping and to carry on a relatively normal life. We became students of Charlotte and learnt the same techniques such that we were able to treat Logan ourselves. We also had success in treating his seizures, allowing him to sleep, eat and breathe and keep him free from infections associated with his condition and his limited motility.
Giggling Ilya about to have his bib put on at lunch-time.
In October 2008, our second son, Ilya, was born in St Austell,Cornwall and is one of the happiest little boys you could imagine. His giggling and singing have brought so much joy into our lives, it’s indescribable. He smiles and giggles through his bath time and when being fed: he laughs when playing with his favourite toys. After some months, we began seeing signs that were all too familiar to us and we now know that Ilya, too, has the same disease – and the same prognosis.
We decided, given the enormous help that Biotherapy was to Logan, that we would travel to the place of it’s inception, in the beautiful north-western corner of Slovenia and the clinic of Mr Zdenko Domancic. Domancic and his clinic have treated a vast number of people over the past 30 years including helping those with conditions that could not be helped by orthodox medicine. We know already that the treatment will help Ilya as we are already experienced in the Biotherapy treatment but we hope that, given the vast experience of Domancic and his team, that they may be able to help Ilya more long term – hopefully, much more long term.
We’ll be travelling to Slovenia in our campervan, visiting other families on the way and funding our trip by sponsorship, with sponsors utilising the considerable advertising space available on our camper and the publicity we hope to gain. If you’d like to make a donation to help us on our trip, you can donate via PayPal using the PayPal link on every page. Any excess remaining after our expenses will be donated to the Klicek Foundation, an organisation in the Czech Republic that helped us a great deal when Logan died and who remain dear friends to us. You can find links to all our sponsors on the Sponsors page. We are grateful for every penny that has brought us closer to realising our trip and getting our little boy to the clinic we believe can help him so much.
Thank you so much for your interest and support,
Regards,
Rufus, Elena and Ilya Duffin
Recent Comments