It starts as every parent’s nightmare. You notice that there is something…different, about your child. Although you try and avoid comparison, you can’t help but acknowledge the gap between their development and that of kids the same age. So, you do what any parent would do. You have your child tested. As much as you are hoping for good news, what you want more than anything is an answer. So you sit next to your baby, holding her hand, for two weeks in the local Children’s Hospital. Finally the test results come back. And every single one is negative. According to medical records, your child is perfectly fine. But a mother’s intuition is stronger, and Jessica knew that something was wrong with her daughter.
Years went by, and it seemed Alaysha was doing better. A couple of months after she started second grade, Jessica received a request for a parent-teacher conference. Alaysha’s teachers noticed that her motor skills were not progressing like the other children her age. They took note of how she seemed to have difficulty with basic tasks like swallowing and walking. The knot returned to Jessica’s stomach. She made an appointment with a neurologist immediately. When the results came back, doctors finally had an answer. Unfortunately, it was the last one in the world Jessica wanted to hear.
Alaysha was diagnosed with Ataxia Telangiectasia (A-T), a rare and terminal condition that has no known cure.
Over time, this unforgiving and vicious disorder will take from Alaysha her ability to walk, talk, and live life independently. Typically, children with A-T are wheelchair-bound by age 10. Alaysha is 8. A-T compromises your immune system so children are prone to many different types of infections, even cancer. A common cold could be deadly to Alaysha. Most people with A-T only live to their teenage years, sometimes their early 20’s. Jessica is now living out a parent’s unspoken, deepest, darkest fear: She will be forced to outlive her daughter.
As crushing as this realization was, Jessica found strength in Alaysha’s outlook on the world. Alaysha possesses a wisdom not typical of an 8-year-old. “If she thinks someone is sad, that’s all we will talk about. There is no other child that worries more about other people’s feelings than her. She is just so innocent, and truly beautiful inside and out.” So Jessica made a key decision. “I try so hard to only put out positive energy around Alaysha, I just want her to remain happy for the rest of the time she has left and experience some of the goodness in the world. If she goes to bed happy, then I have done my job.”
But there are certain realities of A-T that are impossible to mask with a positive attitude. For example, this aggressive disorder is already working on taking away her mobility and speech. The carefree days of daydreaming about Alaysha’s future are gone. There is only today. What she can do today that maybe she won’t be able to do tomorrow. The fear, doctors, therapy, and anxiety have completely turned her world upside-down.
Just when Jessica thought there was no hope for her daughter, something happened that would change Alaysha’s life. The Chive Virginia chapter saw their GoFundMe page and knew there was something they could do to help this little girl. So, they contacted Jessica. The admins and members of Chive VA paid for Jessica and Alaysha to come to a joint meet up with Chive MD and DC. They paid for their hotel for the weekend, showed them around the city and took them to local museums. They gave Alaysha a weekend of memories, experiences, and random kindness. But their work wasn’t done. Unbeknownst to Jessica or Alaysha, Chive VA was submitting an application to Chive Charities on their behalf.
Because of the kindness and compassion of Chive VA, and a $37,000 grant from Chive Charities, Alaysha’s life just got a little bit easier. She can now travel and experience life in her new Ford Flex that fits both her walker and her wheelchair comfortably. Because her decline has been so rapid, it was very difficult for Jessica to accommodate her daughter safely in their previous family car. Now, that’s one less thing they have to worry about. And to help her stimulate her senses and aid her communication as it declines, we purchased Alaysha an iPad so she can continue to learn and thrive.
Although Alaysha’s life has dramatically changed, her spirit and her enthusiasm haven’t wavered. She isn’t interested in running out the clock. She is interested in living every day she’s given. And she’s got the power of the Chive community behind her.