Sydney mums prepare to farewell 'beautiful baby girl' with extremely rare genetic condition: 'No words'

Photos: Mums Candy and Gaia with baby River. Instagram
Photos: Mums Candy and Gaia with baby River. Instagram 

Sydney mums Candy Berger and Gaia Lovell are preparing to say goodbye to their baby girl after she was born with one of the 'rarest genetic conditions' ever known.

After a long journey to fall pregnant, the mums welcomed baby River in April this year. 

From the moment she was born, River 'struggled immensely' and spent the first two weeks of her life in NICU.

Photo: Candy holding baby River.
Photo: Candy holding baby River.  

While the mums carried out 'every genetic test possible' prior to her birth, nothing was picked up. 

Due to her respiratory difficulties, a series of genetic tests were redone. 

"Finally after 10 weeks we got the results to the test...," mum Candy explained on Instagram in late June. "River has been born with one of the rarest genetic conditions known."

"No test under the sun would have picked this up.. it's that rare. Even more interesting is that River is the only baby in the whole world with this specific change in her genome. It's something professionals have never seen before." 

Doctors also explained that there was no cure for the condition and that River had a short life expectancy. 

"We have decided to leave the hospital and we will take River home to make the most of whatever time left we have with her," Candy continued in a heartbreaking post. "How much time you ask? We don't know. Moments, days, weeks, months. We just have to wait and see."

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Candy also opened up about the impact of River's life, no matter how short, and the importance of love and support from friends. 

"There are no words that will ever suffice in a situation like ours. But we are not looking for your words."

"When you witness grief with love and compassion it's transcends words. You don't need to say anything, just send your love, that's all we need or if you feel that's not enough, support our business so we can take more time off to spend quality time with River."

After being discharged from hospital a few weeks ago, River's condition deteriorated rapidly, younger sister Sasha explained on on a fundraising page set up to support the family. 

Photo: Candy and Gaia are making beautiful memories with River
Photo: Candy and Gaia are making beautiful memories with River 

"She is now entering end of life care with the support of Bear Cottage," Sasha wrote. "In this process her Mums have been by her side every moment, loving her and making some beautiful memories."

Both mums have been sharing a series of photos and memories of their little girl as she lives out her final moments. 

"We cannot thank you enough from the bottom of our hearts for the love and support you have shown us in this devastating time," Candy wrote in an Instagram post. 

"We continue to hold River, bathe her, spend every single second of the day by her side and love her till the very end."

 

The fundraising campaign which was initially started to provide some financial relief to the mums while they stay with River, has already raised over $94,000.

The proceeds raised will be split between the Sydney Childrens Hospital and Bear Cottage.

Candy and Gaia said they have been completely overwhelmed by all the love and support and stunned by 'the outpouring of generosity'.

Photos: Making precious memories at Bear Cottage. Instagram

Photos: Making precious memories at Bear Cottage. Instagram

"Once we have space, time and the emotional capacity we will decide how best to distribute and donate to have a resounding impact," they shared. "We have already started discussions with Bear Cottage about what their needs are and will begin those important conversations with Sydney Kids Hospital in good time."

"Thank you for seeing us, holding us and honouring our sweet baby. She will never know how many lives she touched but it doesn't matter as we all do."