Libby's Journey

This is our beautiful and precious Libby.

Libby was diagnosed with Bohring-Opitz syndrome (BOS) at 3 months old. It is an extremely rare condition which affects the development of many parts of the body. It is a life limiting condition with a high infant mortality.

Libby was born at 40+3 weeks on 28th September 2017 weighing 5lb 6oz. She was taken to NICU with respiratory distress. We were told Libby had craniosynostosis and that at some point would need surgery on her skull as her brain was unable to grow. Libby deteriorated overnight and ended up ventilated and on morphine. We received more bad news, Libby had coarctation of the aorta and needed to be transferred to a specialist heart hospital.

We were numb, scared and struggling to deal with everything that was happening.

We had discussions of heart surgery which amazingly she didn't need, she started fighting back and her heart actually improved. We had a beautiful, strong little lady who was so precious and she was showing us just how amazing she was!

On 9th January we had our appointment with the geneticist. We had been living in a bubble and blocked out of our minds the tests that were done for Libby's features and symptoms. when we got her diagnosis of Bohring-Opitz syndrome we felt broken, we thought we had been through the worst when the reality was it was just the beginning. 

Libby's list of needs is growing daily and she has a big team of professionals taking care of her. We don't know what the future holds but we want to give her the best life possible. We take one day at a time as a family and stay positive!!!

Libby will need and benefit from a variety of specialist equipment throughout her life. We are raising money to give Libby the best life and for her to be able to experience things every child should. This includes equipment, house adaptations and therapy.

There is no cure for Libby only symptom management however, we live in hope and maybe one day there will be treatment.

Thank you for reading our story, please join us on Libby's journey and help us to give her an amazing life. Whatever you can contribute will be gratefully received.

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