Riley Slack - Living with Ataxia-telangiectasia

I met Nancy last month, she is the grandmother to Riley Slack a 3 year old little girl I recently photographed. Riley has an extremely rare disease called Ataxia-telangiectasia. It is a disease that seems to surface at the age of two. Riley, who seems to be healthy and bright and energetic and full of all kind of toddler mischief. Will begin to loose her ability to walk and talk. She is also prone to respiratory illnesses. Children with A-T are prone to cancer such as leukemia, and A-T patients are sensitive to radiation and so therefore can not tolerate radiation therapy. If Riley is lucky enough not to develop Cancer, then she will most likely be confined to a wheelchair by age 10 years old. Most children with A-T die in their teens or early twenties from respiratory failure or cancer.
But this is not all.

Riley has an older brother. Dylan Slack who passed away from complications from A-T in March of 2010 at age 5. By the stories I have heard and photographs I have seen, this sweet little boy was greatly loved.

I have not yet met Dylan and Riley's parents. I have seen photos of them at Nancy's home. I have heard their story through "Grandma Nancy" and of course I have spent some time with Riley. I have been to their website and read through it a time or two. I have been captivated and amazed by this family and their story. They make me want to be a better person.

You see, Ryan and Stephanie Slack (Dylan and Riley's parents) are young and beautiful. They are intelligent and loving. They’re also both genetic carriers for the disease. A-T is an extremely rare recessive genetic disease wherein both parents must be carriers and most likely never exhibit any symptoms. In an instance where both parents are carriers, they still only have a 25 percent likelihood of having a child affected with A-T. Ryan and Stephanie had TWO children with A-T.    

Although both parents are dedicated to be self-reliant and both work so they can pay for the medical costs, these medical expenses have become overwhelming and continue to increase as they care for Riley. Through it all, they have worked to maintain a positive outlook on life and continue to keep hope as they care for Riley's health. To help with costs, the Slack's have set up "The Slack Family Blog" explaining more about their story, with information about donations and regular fundraisers.

There will be a fundraiser this weekend. December 3rd and 4th, Friday and Saturday night @ 7:30 @ Desert Hills High School, "the Kalamity" dance team is hosting and performing a fundraiser for the Dylan and Riley Slack Fund, to donate to medical costs for the rare A-T disease. Only $5!

If you would like to donate to the Dylan and Riley Slack fund. Please visit their blog to find out more about how you can help and to learn more about Ataxia-telangiectasia.

For now, I hope you enjoy the photos of this darling, HAPPY, little girl, Riley.  I had a blast following her around as she did some serious inspection of the downtown St. George area.

I wish her family the very best as they love and care for Riley. She is a joy.

Sharee

Much of the medical information regarding Ataxia-telangiectasia was taken from the Slack Family Blog and the A-T Cure Team Website.