A mum from Wythall, whose seven month old daughter has a rare genetic condition, has been overwhelmed by the generosity of her friends and family towards the charity who have provided her with support since her diagnosis.
Nellie in intensive care at almost two weeks old
Cara Bosworth’s daughter, Nellie, was born in February this year at Birmingham Women and Children’s Hospital and immediately taken to the neonatal ICU, as she had breathing difficulties.
“When she was about three days old, she became jaundiced and even when we were discharged early in March, the jaundice remained,” says Cara, 32, a teaching assistant. “It meant that we had to go back to hospital every two weeks for blood tests. Over Easter weekend, we were admitted for further testing, as doctors suspected there was a problem with Nellie’s liver. And it was in May that her diagnosis of Alagille syndrome was confirmed.
“Alagilles is a rare condition which affects about one in every 30,000 babies. The effects vary from one person to another but it can affect the heart, kidneys, eyes and bones as well as the liver. Although I was relieved to be given a diagnosis, this was an incredibly difficult time. I knew nothing about Alagille syndrome and I had so many questions and worries.
“It was one of the specialist nurses at the Children’s Hospital who told me about Children’s Liver Disease Foundation (CLDF) . When I looked at their website I saw that you could reach out if you needed help and advice so I decided to make contact.
“I was so glad I did. It’s lovely to be able to ask any questions and share worries without burdening friends or family. The team at CLDF understand what I’m going through and it’s really comforting to know that I’m not alone. They have encouraged me through difficult moments, such as when Nellie had to have an NG tube fitted, as she struggles to gain weight.
Despite all she has been through Nellie is a happy little girl.
“My sister Sophie was my birthing partner and knew how valuable I found CLDF’s support, so she decided to do the Black Country Triathlon as a fundraiser. It was an incredibly tough thing to do but she felt that in order to raise as much money and awareness as possible, it had to be something very challenging. She absolutely smashed it, not only completing the course, but in more than doubling her original fundraising target! We are so proud of her. Nellie came with me to cheer her on and it was a really emotional day.”
Nellie’s aunty Sophie, pictured front with Cara, did a triathlon to raise funds for CLDF. Also pictured are Sophie and Cara’s parents, Sue and Wayne.
To date, Sophie’s triathlon has raised over £3000 for CLDF and donations are still coming in. “We’ve been very surprised at how generous people have been,” says Cara. “It shows how loved Nellie is. Her first few months have been really tough, but she is such a strong happy little girl. She just brings me so much joy, she is literally my everything.”
Rebecca Cooper, Chief Executive of Children’s Liver Disease Foundation added: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. In order to do this however, we rely on voluntary donations, so we are so grateful to Sophie for her fantastic fundraising – what a wonderful auntie! The funds raised will enable us to continue to support families throughout the UK who are affected by rare liver disease in their children.”
You can still support Sophie’s triathlon fundraising by going to Fundraiser by Sophie Bosworth : FOR OUR NEL (gofundme.com)
