Audrey’s Story

A speech by her mother

This is my daughter Audrey. 

She is almost a teenager and is sweet, determined, and a good friend. She also happens to have a developmental disability and is a medically complex kid with a rare developmental disease, PURA syndrome. Along with PURA comes seizures, the inability to talk, and delays that add up to a shortened life.

Having a child like Audrey is a blessing in so many ways; it teaches increased patience, my heart expanded a thousand times, and I have a forever love. 

But it also brings challenges. You can imagine them: the appointments, therapies, medicines, worries. One that typical families might not think of is loneliness. We spend a lot of time at home because it is difficult and sometimes even unsafe for Audrey to navigate the outside world. It starts to feel like a lot of doors are closed to us.

But A Kid Again opened those doors. 

When we became members of A Kid Again, we looked forward to getting out and adventuring because we knew that we would be supported and accepted in these places that were previously inaccessible. We know we will find our friends, understanding, and excitement to be normal.

What have we been able to do because of A Kid Again?

We have gone to Adventures at Christmastime where my son Alvin could ice skate without ice and Audrey could make music with friends. We have gone to a magic show that truly awed the whole family. Audrey’s favorite experience every year is following the dancing mascot animal train around the zoo. She could do that all day!

We were asked what A Kid Again means for our family…

Do you know that feeling when you have your guard up – and then you have to keep it up, for days and weeks and years? That’s how it can feel with a kid who has a life-threatening condition. But when we roll up to an A Kid Again event, I can feel my shoulders relax, my breathing slow, my smile return, my eyes brighten.

At A Kid Again, I can let my guard down and enjoy my family.