Madisons Foundation - Moms And Dads In Search Of Needed Support

Hi ,
I am very grateful for the help and support I have had from Madisons Foundation connections. We live in NZ and my son has a rare form of tumour that grows inside the head usually starting in the sinuses and spreading. It is not malignant, but is aggressive and spreads and causes major problems. Even our surgeon had only seen 2 of these before my son was diagnosed, so even our family doctor had no understanding of them at all.

My son had his first surgery when he was 12 and then 3 years later we discovered the tumour had returned. I was trying to find out more about the tumour and options maybe for overseas treatment when I discovered the Madison website. Since then I have been in regular contact with mums from Canada, USA and Australia who have children with the same condition. To be able to discuss the concerns and problems with people who have also dealt with it was so good. It was a relief to hear other parents' stories and share my own to help them too.

My son has had to have 2 more lots of surgery and it has been so great getting emails from the other families, checking in to see how we are , and being able to be honest with them.  Many others don’t understand. So often people would say “ but it is ok because it is malignant,!” but they don’t realise the growth grows round the main arteries to the brain, optic nerves, ear canal etc and they are also very vascular with the risk of haemorrhaging, all of these can be life threatening. Thank you so much for the service your website provides.  I have found it really helpful and a great support.

Kind Regards,

 Irene Mosley – New Zealand