HAZEL WILLIAMS

#HOPE4HAZEL

DREAM TRIP TO DISNEY AND SEA WORLD IN CALIFORNIA

$1,893.23 of $5,000

Hazel received her diagnosis just after her first birthday. For the most part, she was young enough that we didn’t notice anything wrong. Also, she is our first child so we had no prior knowledge to base her on. Hazel enjoyed being held and was noticeably snuggly. Every time she is picked up she will curl up and lay down on your shoulder. No matter who is holding her she loved and snuggled them.

Getting the news was an incredible shock as one would imagine. We had been searching for answers to several issues including inconsistent seizures, lack of eye tracking that lead to blindness diagnosis, delayed and unmet milestones, and lack of muscle strength to name a few. So, it was good to get an answer, but a terribly hard one at that. Even though it was an answer, this condition is so rare that it led to new questions and uncertainties about the future reality of our little miracle.

Hazel has made great progress since receiving the diagnosis, but at the time of writing is 16 months old. She still cannot fully sit up on her own, crawl, or have any indication of walking independently soon. Based on the experience of others with the condition, she likely may never walk or talk. This was near crippling news for us. They have seen that the children affected will start to have brain deterioration around 3 years of age, which is why many do not ever speak or become mobile. The life expectancy is 9-10 years old. There is no known way to help stop or slow the deterioration.

Hazel has missed out on experiencing normal infancy and seems to just be entering that phase. To add, her weeks are full of commuting to and attending doctors’ appointments, therapies, and things that no one wants their one-year-old to have to do every day. These multiple doctor appointments a day keep her from being able to have a ‘normal’ childhood by not being able to spend much time on play dates, trips to the park, sitting in a high chair at dinner, etc.

This dream trip would provide an opportunity to create lifelong memories that we may never be able to otherwise. A large portion of our income goes into past hospital bills and maintaining the therapies and doctor visits, so any trip like this is out of the question for the indefinite future. It would mean the world for us to do something like this with our sweet daughter.

- Landrie Williams