Hi all. I don’t know how to start this really. My name is sara. Mother to beautiful twin daughters aged 26. I was 15 when I fell pregnant with them. I’m now 42.
My daughter Gemma passed away in the night on the 8th of January 2020. Her funeral took place on the 4th February.
My daughters both have a rare condition called wolfram syndrome (DIDMAOD) aged 12 when we found out.
Legally blind, seizures, bladder issues, diabetes, diabetes of the kidneys, brain stem atrophy and many other issues.
They say that the life expectancy is 32 years.
On the morning of the 8th I went to go wake my daughter up as she hadn’t come down for her breakfast, she is a early riser unlike her twin Rebecca who loves to lay in.
I found her I found my daughter in bed. She had had a seizure in her sleep and passed away.
How does a mother deal with finding her daughter!! And stay strong knowing it’s going to happen eventually to her sister?? How do I comfort Rebecca and tell her it’s ok when she knows it’s going to happen to her. Not if! But when!! Because it will. I have just lost one daughter and I have to watch her twin sister suffer the same fate and there is nothing any one can do to stop it because her brain stem is dying.
I can’t do this alone. I really can’t. I’m dying inside and I have to look and pretend it’s all gonna be ok.
I have known from aged 12 that this was going to happen. But I don’t think I ever really believed it would. But my biggest fear was always finding one of them in bed and it happened. my baby girl passed away and I was downstairs having a cup of tea!! A cup of tea thinking oh gemmas not up. Must have had a bad night and is sleeping in! She had been gone for about 6 hours and I was sat drinking a cup of tea!!
How do I do this. Please someone tell me because I don’t think I can survive losing them both!