Family members of AVM sufferers

Hi all,

Firstly I would like to introduce myself, MY name is Michael, I live in Australia but originally from the UK, I have two wonderful kids and my wife Leona who was diagnosed with an AVM in September.

The past few weeks has been an emotional roller coaster, to start off with Leona was having problems with her Achilles, this lead to problems down one side of her body. After numerous scans we was informed that she had an AVM in the centre of her brain. I am not a medical expert so I did not know what this was, I really had to reeducate myself and let my kids know in the easiest possible way. Faye is turning 8 soon and she really does understand a lot more than we give her credit for, she does get very upset when she see’s Leona down, but Miles “4” just wants too kick footballs and climb trees.

Leona joined the AVM SURVIVORS a couple of weeks ago, so I thought I would too. I think when something like this happens in a family it really does effect everyone concerned and not just the individual.

I would ask anyone who is going through the same set of thing to get in touch, such things as, how you deal with certain situations, snappy wife’s or husbands, how do you tell the kids, what to expect when the treatment starts etc etc

To finish off I would like to run a Marathon next year for AVM Survivors, this is to raise money and awareness, so help with sponsors, maybe you would like to help raise money or complete the run, then let me know.

Thanks for reading.

Michael, you put it well with the “emotional roller coaster”. Even though it is our loved one going through the physical AVM I found it was just as difficult for the spouse most of the time. Our children were older when my husbands decided to make it’s ugly appearance but it was still difficult as like most on here we had never heard of such a thing. This site has been a savior for me we are a huge family of support and knowledge. My advice is to just be very patient and supportive. We are all here to help please look to us! Many blessings to you all, it will get better! Marie

Hi Michael,

I am sorry to hear of Leona’s diagnosis. It is hard news to take in, and very difficult to know how to explain to children, especially young children. I know you will find wonderful support through this site. There are some truly inspirational people on here who will help guide you and Leona through your journey. There is a sub-group here you may wish to join… They are a wonderful group of people who have welcomed me into the group with open arms. I wish you both all the best and good luck with your journey.

Nadine xxoo

Hi Michael!
Welcome to the community! I’m sorry to hear about your wife’s diagnosis especially for the kids. But there is hope. If you wish to join, there is another group on here for the spouses of those suffering from AVMs. It’s located at: Best of luck and it’s inspiring to hear that you want to help out. Take care of yourself and your family too!

Hi there well my name is Janine and I have a brain avm also we got diagnosed 3 years ago, I also have 2 kids one whom is 8 and also a 5 year old. when we found out I to was suffering weakness on right side of body I have had radiotherapy and it will be our 3 year check in march 2012,we told our kids that mums brain was being a little naughty we had to fly away for a week so they stayed with mum so she has been great, yes it affected our whole family my poor husband was very upset it still does now affect us in different ways, just have the familys help as the support you need is huge, we get there but still it has changed our lives dramatically, here to answer any questions you may have stay strong.