Friend lost 4-year-old son to AVM rupture in 2018 - Looking for support for her

A very close friend of mine lost her precious 4-year-old son in 2018 to a brain AVM rupture and I’m struggling with how to best support her. She also has an 18 year old son that recently left home to go to college. She recently became open to seeing a grief counselor, but she hasn’t found the right person. She has tried participating in a parent support group or two, but the groups she’s tried are with parents that have lost infants or teenagers and she would like to talk with other parents that have lost a young child like she has. She’s asked me to help her find someone but I’m not sure where to start. Any advice or suggestions are welcome. Thanks in advance.

I unfortunately don’t have a helpful answer on who might be able to help her. The loss of a child is even hard to imagine if you have not experienced it yourself. I just want to say I prayer for her family and if she ever just wants to type things to make her feel better, I am a great sounding board. I hope she finds someone soon. Has she checked with a local day care center. They might have an idea since they deal with younger children. Wishing you the best trying to help her and seriously, either one of you can type me any time.

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Where is your friend located?

I don’t have any suggestions just want to send love

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I’m really sorry to hear about your friend and the loss of her son at such a young age… I would suggest she may look into talking with any major neurosurgery centres that may offer some guidance in the right direction… God bless!

We do have a bunch of @ParentsAndCarers in this community. I don’t remember who has a very young child and whose are older but I am sure that most of the parents and carers know how she feels.

Thank you for supporting your friend. I’m sorry that have I no solid direction to give you at this time. I hope she keep tabs on any of the support groups that she can, as people will come and go. If she stays in touch, She may find the people that she yearns to connect with. I know a couple of moms who lost children, not due to avm, but one due to a house fire (daughters 3&6yr old) ( and one (son 7yrs) to another rare condition called Histiocytosis ( They are in Maryland, about an hour or so from Reading. They are living with the devastated broken hearts that your friend has. I am sure your support is helping more than you know, just being there to lend your ear or a should to cry on, and reaching out on here.

My son is 13 now, fighting avm, not a brainer but facial. When he was 2, and I was in a panic researching about avm, this site was a godsend in connecting me to others who were down this road and in the same boat. Luckily, we are all (facial avmers) are still fighting. It’s not an easy road…but it would be a lot harder if we didn’t have people “who get it”.

Best of luck to you and your friend in finding those people.

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How awful. Losing a child must really be the hardest thing to deal with. And although its not the same, now your friends elder child has gone to college it must feel like she has lost them both. I really feel for her and I’m so glad that she has you to turn to… I’m afraid I don’t have any real advice. But time really is a great healer. I’m not saying she will ever forget either child. But she will adjust to her ‘new normal’ eventually. She needs to take every day as it comes though ie baby steps and not try to rush anything. I’m hopeful that bereavement counselling will help and she might want to look at other support groups and online support too. The last thing I’d say is that sometimes keeping busy helps, so maybe she could try some voluntary work or start a project such as fund-- or awareness-raising of rare conditions. Very best wishes.

I wish that I could be helpful here. My 15-year-old recently underwent successful AVM removal surgery and the terror I felt at the prospect of losing him is still very raw. However, I didn’t lose him and so I can’t truly imagine what she felt at the time and is still processing. She is so fortunate to have a friend like you who is actively searching for the most appropriate supports for her. I will pray for her and for you as well, as she needs strong people like you to lean on when she needs it most.

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My adult son died about a year ago. Not due to AVM but child loss is child loss. Have your friend look for a local Compassionate Friends group. Also there are all kinds of online support groups. I met a lady in “Parents Who Have Lost Their Sons” whose son died of AVM rupture


I have seen some in fb groups who are still active after having lost young children. Some will move away and try to move on while others cope while supporting others. Start with AVM as your search.