Elyce is a funny, sassy and determined 2.5 year old. She may not use many words yet to express herself, but she made it very clear within just minutes that she knew just what to do with our sample car and that she did NOT need our help! We recognized immediately that Elyce has the drive to overcome all the speed bumps in her path.
Why Elyce Needs a Car
Elyce has a rare genetic disorder; it is so rare that her doctors know of no other cases in the world. For this reason, her parents say, “It is impossible to know what the future holds for Elyce; so, we just take it one day at a time.”
There are lots of things Elyce does well. She can sit independently. She just recently started crawling, and she buzzes across the floor like a wind-up toy. She can also – as you can see from the picture –stand and walk with the help of a gait trainer.
Other things are harder. She has difficulty coordinating complex motions. She is still working on spoken communication. Currently, she cannot get out and play with the neighbor kids even though she loves the outdoors and is fascinated by all the activity.
A Day in Elyce’s Life
As told by her mom, Kelsey
When Elyce wakes up in the morning (you will know because she is happily jabbering to herself), we pick her up and head to the living room for a diaper change. Then, it is off the kitchen where we seat her in her highchair for breakfast. Elyce cannot independently feed herself or drink by herself. So, we help her load her spoon and encourage her to touch foods and bring them to her mouth. We do everything we can to get her interested in drinking fluids, but most times we end up delivering her milk, juice and water through a squeeze bottle with a straw.
Once Elyce has finished eating (which can take an hour or more), we are off to the living room floor where we put on her clothes for the day. After that we do a variety of things together. We work on standing in her gait trainer. We work on small motor skills and playing with toys. We sing songs, read books and watch TV (her favorite shows are Puppy Dog Pals and T.O.T.S. on Disney)!
We also like to do these things outside when weather permits. Elyce loves to be outdoors. Some days when the weather is nice, she plays outdoors the majority of the day. Being outdoors and watching the neighborhood kids play is an absolute joy to her. She loves other kids. Watching them run around, interact and play together. She often screeches with excitement when she sees them playing. We try to get Elyce as close as possible where she can watch from our laps, a stroller or her blanket.
Next, we squeeze in lunch, a nap, dinner, bath and bedtime routine. All of these things are completely dependent on mom, dad and big brother (13). Elyce just learned to crawl. With crawling, her interest in toys and movement has grown exponentially. This brings our hearts so much joy!!!!
Elyce attends a Development Center twice a week. The first day she attends a toddler class where she participates in music class, gross and fine motor training, snack, and speech therapy followed by a private physical therapy session. The second day she receives private therapy where she works on speech, occupational, feeding and aquatic physical therapies.
We utilize Infant Toddler Services weekly. We receive occupational therapy, speech therapy and meet with a dietician. They come into our home and help us navigate through our “everyday life” all while coming up with innovative ways and solutions in working with Elyce at home. We also work with an occupational therapist at the hospital every other week, dedicating our time to feeding therapy.
Last, but not least, we work hard at home as a family. We focus on our abilities (not disabilities). And most importantly... we LOVE.
Elyce completely has our hearts and keeps us on our toes. We frequently find ourselves crying more tears of happiness and joy over her growth and progress rather than tears of fear, worry or mourning a life we had initially planned for her. We are so thankful for all of our opportunities, therapists, providers and their services. We are thankful for the small things. And, most of all, we are thankful for her.
How a Car Can Help
An adaptive car, that she could run would be life changing for her, truly! She would be able to move about and play with the kids in the neighborhood. She would be able to participate while they are riding their cars, bikes and scooters. She would be included. This not only would mean everything to her; it would mean everything to us as her parents!