OurStories.

On Oct 31st, 2021, our lives changed completely when Elias was born, our little pumpkin baby was the most beautiful boy I've ever laid my eyes on. However, joy turned to worry almost immediately. Elias was born with a rare condition which meant his nasal passage hadn't opened completely, so (because babies aren't mouth breathers), he couldn't breathe on his own. Watching our newborn be taken from my arms and intubated, before being rushed to ICU was one of the scariest moments of our lives, and it was only the beginning of our journey. Within 24 hours we were in an ambulance being transferred to Great Ormond Street Hospital where Elias spent the first 6 weeks of his life having the life-saving surgery to fix his airway, and then an additional procedure on his heart to fix a duct that hadn't closed properly after birth. 

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Elias has now been diagnosed with CHARGE syndrome, an extremely rare and complex syndrome which means he is profoundly deaf, has low muscle tone so is yet to start walking, and has global developmental delay. He loves to eat, he laughs, claps and sings along to his favourite TV shows and games, he finds his own unique way of getting to where he wants to be, and he will show you with conviction when he wants something, especially if his younger brother already has it! For now, Elias needs us to advocate for him, and we have been fighting his corner for him since birth, ensuring we got him into the school of our choice, and making sure he doesn’t fall between the cracks when it comes to NHS care and therapies.

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Elias is a warrior. He has overcome more in his short life than I have done in 34 years. He has taught me patience, humility and love, and he inspires me everyday to be better and fight as hard as he has. When he is older we will absolutely look back on the early years of his life and tell him his 'origin story' with the kind of nostalgia only distance can provide. But in the meantime, we just want him to have the best care possible.

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I have cried, I have cursed, I have been scared, I have been frustrated. But the overwhelming feeling has always been one of loneliness. No one else understood the fight we were fighting, and as Elias' parents we felt like we existed on an island. I wanted to create the Complex Parenthood Group to give other "Professional Parents" (aka Medical Mums & Doctor Dads) the support I was searching for in Elias’ early years: A network of like-minded complex parents who were experiencing what we were experiencing and could give us real life advice that they had lived through.

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Elias's journey is one of strength, love, and hope, and CPG is committed to sharing that with the world while striving to give him, and families like ours, the best possible future.