Nenna has been in hospital for a little over two weeks, the longest admission we’ve coped with yet. She is in and out of ICU with non-invasive breathing support. Nenna’s learning disability and lack of verbal communication mean she needs someone with her who knows her well pretty much all the time. We are crowdfunding to help pay for additional overnight carer-hours whilst she's in hospital (and for subsistence at the hospital canteen for her parents when we don't have the spoons to take in sandwiches).

A little more about Nenna: she has a very rare mutation of the gene CTBP1--only a couple of dozen cases are known worldwide. Sufferers have muscle weakness and are prone to (among other things) respiratory illness, which makes them life-limited. These past weeks have been full of difficult choices, but as you can see, Nenna is still finding things to smile about.

NB: A. L. Lester is my pen name, and most people know me as Ally, so that's what I've gone with on here. We are up to our eyeballs with sick child and hospital communications, so if you have a time-sensitive question, please contact our dear family friend Jeannelle D'Isa at russetblack@gmail.com, who will respond on Eastern Standard time US.

Nenna loves good wishes. She doesn't read, but she does like pictures of baby animals. Send those to ally@allester.co.uk and we will share them with her!