The Roberts Family
Our Story
Harper is our sweet, joyful 8-year-old daughter who lives with multiple complex developmental, medical, and communication challenges. She has been diagnosed with Autism Spectrum Disorder Level 3 with intellectual and language impairment, global developmental delay, severe sensory processing disorder, sleep disturbance, feeding difficulties, and a speech sound disorder. Developmentally, Harper functions between 1½ to 3½ years old across communication, social, adaptive, and daily living skills. She is nonverbal, requires 24/7 supervision, and needs full hands-on assistance for every part of her day — eating, toileting, dressing, bathing, safety, and communication.
Genetic testing through the Alabama Genomic Health Initiative also identified a de novo Variant of Uncertain Significance in the KDM5A gene — meaning the change occurred by chance and was not inherited. Although the variant does not provide a definitive diagnosis, KDM5A has been linked in emerging research to autism, global developmental delay, feeding issues, sleep challenges, learning differences, hypotonia, and other neurodevelopmental concerns. Because this area of genetics is still evolving, doctors cannot predict exactly how this variant may affect Harper long-term. This adds a level of uncertainty to her future and means her needs may continue to change as she grows.
Harper also recently lost her Medicaid waiver, which previously helped support many of the services and supports she relies on. Losing this coverage has created an unexpected gap in assistance during a time when her needs remain significant and constant.
Despite these challenges, Harper is the light of our lives. She is loving, funny, curious, and resilient. She just experiences the world in a way that requires full-time guidance, protection, and support.
Your kindness, prayers, and generosity mean more than we can put into words. Thank you for helping us continue providing the care, safety, and stability Harper depends on every single day.
Family Updates
Hi everyone. We wanted to share a little update on Harper and where things currently stand.
First, we have some encouraging news. Harper recently moved up on one of her waiver waitlists, which is a step in the right direction, even though we're still waiting for an opening. We also have another waiver application in progress. For that one, we've actually been offered a spot and are now waiting on final approval from the state. So we're in a unique position where one waiver is state-approved and waiting for an opening, while the other has an opening and is waiting for state approval. We remain hopeful that one of these paths will finally provide Harper with the services she desperately needs.
Over the past few months, Harper's nutritional and dietary needs have changed significantly. Because of those changes, the cost of keeping her fed and meeting her medical dietary requirements has increased much more than we anticipated. Like many special needs families, these aren't expenses we can simply cut back on.
At the same time, Harper's dad is currently between jobs as he transitions into a new position. While we're excited for this new opportunity, the temporary gap has definitely put additional financial strain on our family.
We're also now facing repairs and modifications to Harper's mobility chair and wheelchair ramp. These aren't optional expenses—they're essential to keeping her safe, comfortable, and able to get around. Unfortunately, they've added another unexpected financial burden during an already difficult season.
We are incredibly grateful for everyone who has supported Harper, prayed for our family, shared our story, or simply checked in on us. Every bit of kindness reminds us that we're not walking this journey alone. Thank you for continuing to stand beside our sweet girl as we navigate each new challenge. 💓
We wanted to share a quick update and thank every single person who has supported Harper and our family through this journey.
At this time, Harper is still waiting for waiver services, and unfortunately we do not yet have any additional answers or timeline regarding placement. While we continue navigating that process, her day-to-day needs continue to grow, particularly in areas such as nutrition, personal care items, therapies, and other essential supports related to her care.
We remain incredibly grateful for the generosity, encouragement, and outpouring of love shown to our family. Your support has made a meaningful difference in helping us meet Harper’s needs while we continue this wait.
Thank you for standing beside us, praying for us, and loving our girl so well. We appreciate each of you more than words can express. 💛
Family Update 💛
We just wanted to share a quick update with everyone who has been following Harper’s journey.
We are still currently on the waiting list for the waiver services. While we haven’t received movement yet, we remain hopeful and continue doing everything we can in the meantime to support her needs.
The waiting process can be long and uncertain, but your prayers, shares, encouragement, and support truly mean more than we can put into words. Every bit of love poured into our family helps us continue providing Harper with the therapies, tools, and resources she deserves.
We will continue to update as soon as we hear anything. Thank you for standing with us. 💛
— The Roberts Family