A 10-YEAR-OLD girl died with her parents by her side just days before Christmas.
Little Elsiee Bose passed away at home following a life-long battle with a rare heart condition.
Her mum Alicia McNally described her as a “living angel who lit up every room”.
Other relatives and friends said she was “the most inspirational, bravest, strongest and beautiful girl”.
Elsiee, from Acocks Green, Birmingham, was born with hypoplastic left heart syndrome (HLHS) – a defect where the left ventricle, which pumps blood, is much smaller than normal.
The schoolgirl underwent more than 10 operations, including five open heart surgeries, and was added to the urgent heart transplant list.
Sadly, she died on December 10 with her heartbroken mum Alicia, 28, and dad Stuart, 29, by her side.
Alicia said: “She was an actual living angel and was absolutely perfect.
“She lit up every single room she walked into and was such a lovely girl.
“She was insistent on going to school and seeing her friends even in the times when she was sent home for end-of-life [care].
“We brought her home for Christmas in the hope we’d get as much time with her as possible.”
Elsiee started “going downhill” in June after fluid built up inside her and her stomach swelled, the mum-of-three added.
Tragically, they then received the news that these were symptoms of end-stage heart failure.
“She was sent home as end-of-life in June and she got better – she did what none of the doctors thought was possible,” her mum said.
“We went back to hospital again in July as the fluid built up again, and she was sent home again as end-of-life and fought and fought and fought.
“I could feel she wasn’t ready to give up. She got better again and was losing the fluid.”
Elsiee was added to the waiting list for urgent transplants in September, but her condition deteriorated and she died days after going home – just two weeks before Christmas.
A GoFundMe has been set up to help pay for her funeral on January 11.
On the fundraiser, Elsiee’s aunt Sian Hanna wrote: “Elsiee was the most inspirational, bravest, strongest and beautiful girl.
“Us all as a family and also friends had the honour of spending the most special 10 years with her, and they were the best 10 years of our lives.
“Elsiee has fought so hard for the whole 10 years of her life, every obstacle she had to face she beat all odds every single time from the moment she was born.
“Elsiee is now at peace and finally out of all the pain and she will always be loved endlessly and missed every single day️.
“I hope you’re having the best time up in heaven, our special little angel.
“Now it’s time for you to rest in perfect peace and free from all the pain until we see your beautiful little face again.”
What is hypoplastic left heart syndrome?
HYPOPLASTIC left heart syndrome is a form of congenital heart disease, meaning it develops in the womb.It is where the left lower pumping chamber (left ventricle) of the heart does not develop properly so is much smaller than usual.The mitral valve between the left ventricle and the upper left filling chamber (left atrium) is often closed or very small.The main blood vessel that carries blood from the heart to the rest of the body (aorta) is also smaller than usual, meaning that the heart is unable to pump blood around the body effectively.The cause of HLHS is not clear, but experts believe it is triggered by something going wrong in the very early stages of pregnancy.Most babies with it will appear normal immediately after being born.But they may become breathless and very ill if they are not treated quickly.It’s not possible to correct HLHS with surgery, but various operations can help children to have a better quality of life.About 12 babies are diagnosed with a congenital heart defect in the UK every day.Source: Great Ormond Street Hospital and the British Heart Foundation