Minnie May Granger

Hello everyone.

If you’ve clicked on this link already you’ll know I’m Hannah, my husband is Gavin and we have 3 children. Finley who is 11, Cai who is 5 and Miss Minnie who is 2 in September. Minnie was born in 2022, 8 weeks before we got married. Yes, we are crazy!! She was the biggest surprise and she brought so much joy to us. When Minnie was 2 days old she had genetic testing then later came the diagnosis of a rare chromosomal mutation on chromosome 2 - we later found out she has 21 missing genes. 4 very significant ones. SCN2A is her most serious full gene mutation, which is a gene used for a sodium ion channel, more sodium is going into the brain cells than should be resulting in Minnie being loss of function (making it a life limiting condition). Epilepsy is her biggest medical problem, Minnie has a thing called developmental and epileptic encephalopathy. This means Minnie’s brain in constant over load of activity, her brain is always seizing, she will more than likely never have control, she seizes without having the physical symptoms of seizures. We have tried 7 medications and ketogenic diet with no full control. Minnie is now under palliative care team, Robin House Hospice for support and respite she is the most wonderful little girl with the biggest smile and an even bigger hearty laugh - She has been through the wars in 2 years but still batters through whatever is thrown her way.

Minnie literally cannot be left down stairs alone for me to go and do the simplest of tasks I.e the toilet, get a washing load from the bedrooms etc. We are hoping that our end goal is to be able to have a bedroom and wet room built so that she can have her own safe space. She is with me 24/7 and needs 24/7 monitoring as she is at such high risk of SUDEP. We have asked and tried for help from the social work services with no joy so far, I have contacted MPs with no joy so now it brings me to the world of social media.

We ask if you could donate anything you possibly can to help Minnie live out whatever life she has comfortably and with dignity and respect.

We appreciate any form of support you are able to give at this hard time, us as a family are taken back by the response you all have to help so far with Minnie’s journey.

Myself, Gavin, Minnie & the boys thank every single one of you.

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