Imagine your new-born child was born today. Your world is lit up in an instant. A part of you has been created.
Imagine finding your child has a malformation.
Imagine being told “It’s not life-threatening, your child can still walk and talk. He’ll have to make some adjustments but he’ll be fine.”
Imagine not knowing what is wrong with your child.
Imagine coming home from the hospital and trawling through pages of Google searches and discovering your child has a rare syndrome.
Imagine taking your child to a doctor and having them stare blankly at you when you explain that you suspect your child has a rare syndrome because the doctor has never heard of the syndrome.
Imagine having to fight for surgery or medical tests because the doctors don’t know about the rare syndrome.
Imagine being told your child will have to have surgery which includes a skin graft for which the skin will be removed from the groin area. Then imagine finding out there was a less harmful but successful procedure.
Imagine having to go backwards and forwards to a G.P. to get a referral to a specialist who can help your child as soon as the referral comes through. Imagine months and months of waiting.
Imagine rushing your child to the emergency room as you suspect the on-set of one of the symptoms of a rare syndrome and having to explain to the doctors what your child has, what it means and why it’s important certain tests are carried out.
These events transpire every day, imagine that!
This is why we are here, running this charity and raising money to raise awareness to the medical professionals and to support families.