When we moved into our property our garden was a mound of wood chips and mud. We needed to move in quickly as we have a disabled daughter and needed an address for her care package to be put into place.
We spent 10 months living in hospital, our daughter was only given a 10% survival rate, She was born with two rare conditions: CDH, where her bowels were up in her chest restricting her lungs from growth, and Nager syndrome.
She has a small jaw and couldn't open her mouth at all when born due to her jaw bone being fused together. She also had ASD, VSD and PDA and jaundice. She was born at 31 weeks weighing 2lb 2oz, and had to have an emergency tracheostomy at 2 hours old. The hospital had never done this with a baby that young or small and saved her life. She has been ventilated ever since. She also has a cleft palate and had a small brain bleed at birth.
We have never heard her voice and she is learning to sign. She couldn't eat orally and had to have an NG tube and she recently had a operation for a gastrostomy tube. She is having so many operations in the future in terms of her jaw and other issues each day.
Ariella grew stronger in hospital, me as her mother didn't leave her side, I stayed day and night at the hospital.
We moved into our home the same day she was discharged, she came home after 10 months and has defied all odds. We had to give up work to take care of her complex medical needs.
Unfortunately due to her being vulnerable she cannot play in the garden that we have. She loves being outdoors and exploring, we currently have builders building houses opposite, which means Ariella cannot play on the green out the front, the only place she has to play in the garden is our trampoline. It would make a dramatic difference to her life to have a place away from bugs to be able to play - her special place, for a special and remarkable child.
Ariella has had to fight all her life just to survive, she battled hardships people can't even begin to imagine. She has proved so many people wrong and is the strongest person I know, she is always happy and takes life as it comes. If there is anyone who deserves to have a special garden to play in it would be her - this incredible girl doesn't let anything stop her.
Ariella is currently taking part on having a documentary filmed about her life, as with both her conditions of Nager syndrome and CDH, there are very few known cases throughout the world.
As a family we have been set on raising as much awareness as possible for her conditions as she truly is a miracle. Please consider us for this remarkable opportunity, it would make a very big difference to such an incredible little girl’s life. ❤️
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