In the heart of Urbana, Ohio, Lydia and her husband Charlie embarked on an unexpected journey that began with the arrival of their daughter, Dagny. Diagnosed with achondroplasia, their story is one of discovery, resilience, and unwavering love.
"The first clue was during an ultrasound," Lydia recalls, "Dagny's femur length was shorter than expected." This uncertainty led to further tests, which remained inconclusive until Dagny's birth. "When she was born, her hand... it was a very distinct trident. That’s when we knew for sure," Lydia shared, describing the moment of realization.
Receiving the official diagnosis in January 2022 was both a challenge and a relief. "It was completely overwhelming," Lydia admits. But as they delved into understanding achondroplasia, their apprehension turned into determination. "The more we learned, the less stressful it was. Knowledge became our strength," she reflects.
Seeking medical advice and support was a journey in itself. "Our hospital provided good care, but there was a reluctance to confirm anything without a genetic test," Lydia explains. The family eventually found solace in a supportive network of healthcare providers, including specialists at Cincinnati and Akron Children's hospitals.
Lydia found immense value in connecting with others on similar paths. "We enjoy the camaraderie from fellow parents of LPs," she says, emphasizing the importance of these connections in their lives. "Social media has been great for connecting with other parents and caregivers too."
With Dagny's education on the horizon, Lydia and Charlie are proactively planning for her future. "We're carefully evaluating local schools," Lydia states, emphasizing the importance of a nurturing educational environment for Dagny.
Though new to advocacy, Lydia is passionate about raising awareness. "It's hard to be afraid of something you understand," she notes, emphasizing the power of knowledge in fostering acceptance.
Joining the VISTA Study was a natural step for their family, driven by the commitment to advance understanding of achondroplasia. "We're always eager to help," Lydia says, "and we hope our participation helps other families understand how to achieve the best outcomes for their little ones."
Every milestone Dagny achieves is a celebration. "Maybe it's just because she's so young, but it feels like she grows up a little each day," Lydia muses. They cherish each development, from her first words to her confident steps.
Lydia offers words of encouragement to other caregivers: "You don't need to know everything right away. You are your child's biggest advocate." Her message is one of patience, advocacy, and unwavering support.
For Dagny's future, Lydia and Charlie dream big. "We just want Dagny to feel empowered," Lydia asserts. "We'll keep reinforcing her confidence and independence."
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
