SafeHaven4Caitlin

SafeHaven4Caitlin We are trying to create a safe space for our beautiful daughter to have as her own as her condition deteriorates

We have hung our orange bunting ahead of tomorrow’s Battens Disease Awareness day. 🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡Somehow, every year th...
08/06/2026

We have hung our orange bunting ahead of tomorrow’s Battens Disease Awareness day.

🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡

Somehow, every year that passes I am finding it harder to let myself think of Caitlin’s condition & the fierce fight I once had feels more like defeat.

Please join us tomorrow by wearing something orange or popping something orange up in the window to bring more awareness & hopefully one day a cure!

Batten Disease Family Association

She's back again, 2026 England football team para talent day at St George's Park National Football Centre
01/04/2026

She's back again, 2026 England football team para talent day at St George's Park National Football Centre

17/03/2026

After a little delay posting

It was a signal dead zone for Nina Fenemores challenge in the artic, but my gosh she did everyone proud!!!

Below was her final comment.

‘Mission complete!!!

That was a very tough event. But one im so glad i did. I will post more pics and video of the last 2 days once ive had a hot shower.’

https://app.collectionpot.com/pot/SafeHaven4Caitlinbyninafenemore

It’s Mother’s Day today and rather than spending time with her own child, she is in the Arctic raising money for those w...
15/03/2026

It’s Mother’s Day today and rather than spending time with her own child, she is in the Arctic raising money for those who have been helping mine!

This is her day 2 and I can only imagine how exhausted she already is! Any encouragement would be appreciated. ❤️

Her check in this morning, it’s a bit of a dead zone zone signal, so we were lucky to get this.

‘25km Cross country skiing today after a 90 min ski lesson 🤣 not doing too bad, at the 1st check point now’.

Nina Fenemore Batten Disease Family Association Cambridge Rare Disease Network BBC Cambridgeshire

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