Support miraculous baby Nina, born with Edward's Syndrome

We are fundraising to support our beloved friend Shakara who has recently given birth to Nina Rose, a beautiful baby with full Edward's Syndrome. Shakara was not prepared for new motherhood and instead had prepared to be grieving her child. Shakara is overjoyed to be a new mum, but also overwhelmed and unprepared. She has no parental or financial support, is separating from her partner and has to move house and find somewhere to rent. We want to help during Nina’s life, however long that may be, and beyond, as although Nina is a perfect joy, her diagnosis is certain and Shakara will need support as she grieves.

In Shakara's words:

“Nina Rose survived birth and is still alive despite her diagnosis. Nina was born on 18th June to a shocked Mumma who kept announcing "she's alive! she's alive!" She unexpectedly did not need oxygen or tube feeding, she has plenty signs of Edward's syndrome but despite a small PFO her heart is functionally normal, she is astounding medical staff and making no sense to us and I love her for this mischief! Nina has been so so loved since that day, everyone who meets her or has been a part of her story cherishes her life, though it is diagnosed to be short. But until then, she is wrapped in love and care, even while there is much difficulty and challenge surrounding this story...Nina doesn't seem to care about that though! She is growing and thriving, and is here for however long she decides - and we will let that be. I cannot believe this is the news I am sharing - I expected/prepared myself to be announcing the birth and death of my beloved daughter in one, instead I am a new mum out of nowhere! She is the most incredible, surprising gift, and I'm so happy to finally share her with you.”

Being a new single mum is a struggle at the best of times, and Nina's diagnosis brings weekly hospital appointments, gruelling meetings and worries. Shakara is in the process of applying for financial support, but this won't cover her costs. We would love her to afford essentials and more: lactation support, breast pumps, bottles, food, vitamins, unfunded physio for Nina, equipment, deposit for her (rental) flat and moving expenses. If we could achieve, or even surpass our target, we would love Shakara to have help with cleaning and cooking and some overnight support.

There are so many children and parents in the world who desperately need our help and money, none more worthy than any other. We are very grateful if you would like to help Shakara and Nina Rose in making her short life as special and easeful as possible. Every contribution, no matter the size, is received with love and gratitude. Please help us by sharing this page with friends and networks. Thank you.

Learn more about Edward's Syndrome (Trisomy 18) here: NHS There are different types, Nina Rose has full Edward's syndrome.

UPDATE at 6 MONTHS! 18.12.24

Nina is 6 months today! News from Shakara:

Today is Nina's 6 month birthday!

She started smiling one month ago - something I never thought I'd see.

We moved! We're so much happier and feeling safer here and are closer to the hospital - helpful as I'm there every week!

Thank you so so much for supporting us. I thank my lucky stars for the crowdfund every day. It has allowed me to move into a beautiful safe home for me and Nina, it's made it possible for me to see family over the holidays, it's enabling me to heal my back injuries so I can hold her for longer (and be in less pain) and it's helping me be the mum she needs.

But it’s still very hard, every day. Nina cries regularly for 10 hours at a time and needs constant rocking and bouncing, which is tough on me physically. She can't move her limbs so gets agitated unless I'm constantly moving them for her. I am looking for consistent home help but it's on average about £800 per month for 2 days of help a week. If you feel able to share the crowdfunder so we can reach beyond our inner network that would be wonderful.

Nina had a 30% chance of making it to birth, and now she has a 13.5% chance of getting to one year...so the fact that she's made it to 6 months is completely astounding!* Not only that - she continues to thrive medically, her cerebellum (too small in early scans) is now the size of a normal baby's, she is breastfeeding like a pro and successfully started solids. No tubes, no machines, no assisted feeding or breathing or anything as yet! Her fingers and thumbs are opening more each day - she can now suck her thumb!

Thank you all so very deeply, I hope you will join me in celebrating Nina's miraculous 6 month birthday (cheers!). We wish you all a fun and festive holiday period, with love,

Shakara & Nina Xx

* Around 70% of T18 pregnancies diagnosed at 13 weeks (like Nina was) end in miscarriage or stillbirth. Of the 30% that survive, 86.5%, pass away before they are 1 year old.

https://www.soft.org.uk/trisomy-18