Support miraculous baby Nina, born with Edward's Syndrome

We are fundraising to support our beloved friend Shakara and her child 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, and has separated from her partner. We want to help during Nina’s life, however long that may be.

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.

We reached our initial target, which was set over a year ago now, and since then, challenges have increased and Nina needs constant attention and care, pushing Shakara beyond human limits. Shakara has recently lost much cherished support of the hospice, Rachel House, and a volunteer who helped her for 2 hours a week.

So far this fundraiser has helped with: lactation support, breast pumps, bottles, food, vitamins, unfunded physio for Nina, equipment, deposit for her (rental) flat and moving expenses.

As Nina moves into her second year, we would like to raise the financial support needed to pay for Shakara to get help around the home, and specialised support from a professional with Nina. More info in the updates.

There are so many children and parents in the world who desperately need our help and money, none more worthy than any other. 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.

* 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