Babies Death - Rare Disorder

[tiggerandpiglet]

Hi all

Does anyone know any chat rooms or websites for parents who have lost their babies due to rare diseases?

I have been searching for a while, cant seem to find anything
Thanks

sorry , i don't, but will bump it, someone will come along

Tiggerandpiglet- others on here have lost children, keep posting hun, this is a good one to talk on.
Other that that i don't know.
I'm so sorry

I think that Netmums has specific chat rooms on their 'coffee house' boards for bereavement and parents who have lost a child. Hope this helps

bump

Contact a family and Unique both help families with children with rare disorders. I'm sure they would have knowledge of bereavement support groups too.

I'm so sorry tigger

Hi Tigger, I am vio, my son James passed away to a rare genetic disorder on 11 Sep 07, he would have been just over 6 months now.

It's hard, it comes and goes...I can say I am a stronger person now after what I have been through but deep in my heart theres a sense of emptiness... I often think about him..I can imagine him going to others house getting sweets in Halloween..yes, I can only imagine...the day we were told that hes not going to live ,...I knew I can never see him talk or walk...stimes tears just running down my face without me even realising it..I miss him loads.

Vio - (((((hugs)))) I often think about you and your sweet boy

Tigger - I'm so sorry

Hi, I havent found any either on here. My son Toby died on 1st August, he was 2yrs 9 mths. He was severely disabled and for all his life we had no diagnosis. He went through so many tests and daily life was hard but he still came out smiling. From his post mortem we learned that he had "Aicardi Goutieres syndrome which is a rare progressive brain disorder. It is genetic so we will have to have councilling in the future. They discovered the gene last year so pre natal testing is an option for future pregnancies.
Not a day goes by when I dont think about my little boy and how I miss him so very much. Things are still very hard but trying to cope with life a day at a time.

Its nice to share stories and our happy memories of our darling children x

so sorry and thinking of you,sometimes people in rl change the subject when we talk about our lost little angels but here everyone is so lovely,its coming up to one year since we lost jayden ,its hard at moment even my mum said on thursday its time i got over it,i should be grateful for our 3 lovely granddaughters,ffs i wanted him as well,call me greedy,

Hi

Have you found SANDS yet? (Stillbirth and neonatal death society). My friend who lost a baby due to a rare incident in the womb found them an absolute lifeline. If there are any specific groups they will know about it.

My daughter died in January of SUDC (sudden unexplained death in childhood) which is rare but happens still to too many families.

Contact me if I can be of any help.

gggglimpopo at hotmail dot com