Hi, my name is Danielle Chapman.

The past five years have changed my life forever. I lost my husband suddenly on Christmas Day 2020 at just 30 years old. Through unimaginable grief, I eventually found love again with another amazing man and hoped for a new beginning. I never imagined our first baby together would face such extraordinary challenges.

Our son Cassian was born at 26 weeks with a rare condition called TOF/OA with VACTERL syndrome. The tube from his mouth to his stomach didn’t form properly and was connected to his airway instead, requiring life-saving surgery immediately after birth.

During our neonatal intensive care (NICU) journey, he developed an infection that caused severe brain damage. We spent ten long months in hospital before finally bringing our precious boy home.

Cassian is now two years old and has endured fourteen procedures. He has never eaten orally and is PEG fed. He has cerebral palsy, epilepsy, chronic lung disease, cerebral visual impairment, global developmental delay, microcephaly, dystonia, tracheomalacia and extensive bilateral cystic PVL. We have been told he will likely never walk, talk or think independently.

Life is relentless. Our days are filled with medications, chest physiotherapy, splints, stretches, specialist equipment, private therapies, appointments and endless admin. Every day is about meeting his most basic needs. It is exhausting and all-consuming.

I am a proud person. I am very good at putting on a brave face. But I can’t do that anymore. I need help.

We are looking to raise funds for private therapies, specialist equipment and intensive treatment programmes that are expensive and not available through NHS funding.

Our wish is to improve Cassian’s comfort, development and quality of life, and to give him every opportunity to experience the world in his own unique way.

Cassian has endured more in two years than most people will in a lifetime yet he is the happiest, smiliest little boy. He is stronger than statistics and braver than circumstances.

This may not be the life we would have chosen for him, but he continues to defy the odds.

He is our hero.

If you are able to donate, no matter how small, it would mean more than I can put into words. If you are not in a position to give, simply sharing our story could help us reach someone who is.

Every contribution will go directly towards therapies, equipment and opportunities that could improve Cassian’s quality of life.

Thank you for taking the time to read our story, and for any kindness, support or encouragement you can offer. We are endlessly grateful.