The story of Caroline
Our story started 6 years ago when Joshua was born.
My husband, my daughter and I couldn’t wait for Joshi to join us and the day he did our lives became complete.
He was taken from my arms only seconds after being born due to his lack of breathing capacities by himself. He was incubated and then remained in the hospital for the next 6 months. No one knew what was happening to him. He couldn’t breathe, he was blue, he had severe apneas, he had to have blood transfusions, he had severe hypothonia to give some examples. Months went by like this until he became stable and we were allowed to leave the hospital.
Days and days went by and two years after his birth we received a diagnosis…PURA Syndrome. It si a day we celebrate every year. the day we received a name to what had happened to him.
Up to this day we have lived many experiences on this new journey we are on. For us our life is Perfect with every moment we share. There is not much information about this syndrome as there are only about 300 hundred in the world and only six in Spain (he was the first diagnosed here). He is 6 now and can’t walk, speak, has difficulties eating, fits and many other symptoms but he has taught us a life time lesson. Happiness is a skill that can be learnt. Every smile he shares with us is gold for our hearts. Both our children are perfect the way they are.
Our life is complete.Â