Our wonderful family is comprised of myself, my husband Brian, big sister Brennan (10 years), Hayden (7 years), and Remy (sweetest dog ever!). I struggled during my pregnancy with Hayden – low fluid and her small size meant I needed bedrest to protect her. What a relief when she was born and we thought those difficulties were past us! We realized quickly, however, that we needed to continue to work hard to protect Hayden and help her grow. It was very difficult to feed her because she didn’t drink much from the bottle. We found out later she was aspirating thin liquids and then required thickened liquids for drinking for about 18 months after that to prevent her from choking and getting pneumonia. She was a very weak baby and was missing developmental milestones. Hayden began physical and occupation therapy around 8 months of age which helped get her stronger. She worked very hard and finally walked right around her third birthday. We were so very worried that she would never walk and so this was a momentous occasion!!
Hayden received a genetic diagnosis around 18 months of age and we have had to cope with the fact that she likely will never have children of her own and likely will need lifetime support. There is no name for her specific genetic issue but part of her X chromosome is duplicated. Her motor and behavior difficulties have been attributed to this chromosomal duplication. Hayden received a diagnosis of autism around 6 years old but her sensory and behavioral needs were apparent long before that. Academics and school structure have been difficult for Hayden as well. She started a new private school this year for kids with autism which has been a blessing to her and our family.
Hayden continues to receive physical, occupational, speech, and music therapies weekly. We are so proud of how hard she works and how far she has come, and want to continue to give her everything she needs to succeed. She has taught her family and everyone around her how to be more patient, compassionate, and inclusive. We are so thankful for her.
The gift we are requesting:
An adaptive bike from Freedom Concepts would open up the world to Hayden. Her sister enjoys biking around our neighborhood with friends and recently needed a new bigger bike. When we were bike shopping, Hayden asked, “where’s my bike?” I wanted desperately to be able to show her a bike that is hers but traditional bikes do not work for her due to her low tone, poor endurance, and issues with proprioception that make getting on a typical bike very scary for Hayden. Hayden has used a Freedom Concepts bike before during an intensive physical therapy session and felt very secure! Finding activities we can all enjoy as a family is difficult. A bike would allow Hayden to join in on this activity that the rest of her family enjoys immensely.
Gift: Freedom Concepts Adaptive Bicycle
Location: Fulton County
Given: December 2024