Daisy was born to myself Toni & father Adam in 2019 at 40+6 weeks after an uneventful pregnancy by a forceps delivery. Daisy Initially appeared to be a healthy baby passing all her newborn screenings and was able to go home once I was discharged.
The next morning I raised my concerns to the doctors as Daisy appeared very sleepy, was feeding poorly and didn’t cry! Later on that day Daisy was transferred to the neonatal intensive care unit. It was here where our nightmare began.
Over the next few days Daisy deteriorated, was feeding poorly and having difficulties breathing on her own. After trying different breathing aids it was decided Daisy needed to be ventilated. She was moved to the most intensive care room and ventilated for almost 3 days.
On Day 9 (diagnosis day) Daisy was doing much better, she was now completely breathing on her own and we thought she was getting better. Little did we know the next conversation with the doctors was about to change our life forever.
Daisy was diagnosed with a rare metabolic condition non-ketotic hyperglycinemia. NKH affects 1 child in every 76,000 born, there are approximately 50 kids in the UK and 500 worldwide living with this condition.
Sadly the mortality rate for children born with NKH is high and many die before they make it out of toddlerhood. Those that survive are often extremely disabled with uncontrollable seizures.
There is no cure however, there is research underway looking at gene replacement therapy, which may in the future hopefully save our babies life and prevent any parents in the future having to go through the nightmare and the heartache we have.
We have raised over £25,000 plus gift aid towards research for gene therapy.
Daisy is now 3.5 years old and still suffers every day with the effects of NKH and the damage it has caused to her brain. However, she is such a strong resilient and beautiful girl who fights everyday to prove everyone wrong. Next year she will hopefully start school, something we never dreamed of and we hope she will thrive even more there.