Parent Carer Collective: Landrie Williams

Busyness, seizures and uncertainty are part of everyday life for this mum of a rare girl.

Three-year-old Hazel Williams is one of 23 known children in the world with her condition, PIGN-CDG, a form of childhood dementia. “It causes her brain to deteriorate and all of her organs to slowly fail,” says Hazel’s mum, Landrie, from their home in Mesa, Arizona. “There isn’t much anyone knows on how to help treat her. It’s all trial and error, since it’s so rare.”

Hazel had her first seizure at one month old and, since then, life for Landrie and her husband, Kade, has been non-stop. While managing their daughter’s daily appointments and medications, making time for play and also caring for their new addition, three-month-old Rhett, this family is hopeful for the future – no matter how mysterious it might be.

Here, Landrie shares some of her story and advice for fellow caregivers.

When we are expecting a child, we usually expect to be their parent, not their ‘carer’. Do you identify as a ‘carer’ to Hazel?

I don’t feel that I’m Hazel’s ‘carer’. I’m her parent. The way I view it is that both of my children have needs and I’m there as their parent to help meet these needs. Hazel’s needs may be a little more in-depth because of her disabilities, but I’m just her parent, fulfilling her needs.

How did you start forming connections with other parents raising kids with disabilities?

Hazel started to receive laser treatment in a small office and everyone who was being seen there became close friends, helping each other and just being there for one another. We now have friends all over the US from doing this treatment.

Nowadays, what does caring for Hazel tend to look like?

Hazel is currently on 14 medications, which we help her take throughout the day. She has about nine appointments each week, all of which are about an hour’s drive away from home. We are also constantly trying new things to get her seizures under control – she has about 200 seizures a day. Between appointments and taking medications, we spend any free time playing and learning in different ways.

Can you compare your initial thoughts and feelings around parenting and caring for a child with disability to how you feel now?

Learning about Hazel’s disability was very tough, but it was something I was ready to help her overcome. I went to school for cardiology and worked in the medical field for a while, but while the medical world wasn’t new to me as a provider, it was new to me as the mother of a patient. That said, what I learned from my work and schooling has helped me ask the right questions and get the proper care Hazel needs.

What do you find most challenging about being a parent carer? And on the flipside, what brings you the most joy?

Something that’s been a struggle recently is being the only person who knows everything about Hazel’s medical care. I’m the only one who knows how to give each medication and deal with her seizures. It makes me feel like I’m unable to not be around and available.

However, on the flipside, I love that I’m able to always be around and there for Hazel. I can see the slightest improvements she makes and always be able to cheer her on. Hazel and I have such a unique relationship.

Many parent carers need to step out of their careers to meet their child's needs. How has your working life changed, if at all, since becoming a parent – and how do you feel about these changes?

I was working full-time until Hazel was about a year old and we finally received her diagnosis. When we received her diagnosis I stopped working and started to do everything to help her. I think I am exactly where I need to be. I wouldn’t change anything.

What supports have you put around yourself – or do you hope to put around yourself?

Hazel has a lot of followers over a few social media platforms. The people who reach out are always cheering her and us on. We are surrounded by family that are always willing to help us and we also have great friends who are in a similar situation to us.

How has the Hibi app helped your family?

Hibi has helped our family tremendously. We use it to keep track of all 14 of Hazel’s medications throughout the day. I track her appointments and add any questions or notes that come up during them. Also, we have a respite provider who helps from time to time and she has the ability to add information so I can see what was done while she was here helping.

What do you wish other people knew about life as a parent carer?

I wish people knew it’s not easy. There is never a time that you can relax. Something can happen at any moment and you need to be prepared, always. I wish people would teach their children to interact with children with disabilities. I wish they knew nothing was wrong with them, they are just a little different. It doesn’t need to be a scary topic and it doesn’t need to be avoided.

What advice do you have for parents who are new to caring for a child with disability?

Always follow your gut feeling. You know your child best. Never be scared to ask all the questions, even if they don’t make sense. Asking all the questions could get you information you may not have been able to get otherwise.

Looking to the future, what are your hopes and dreams around how Hazel is cared for and your role in her care?

My hopes and dreams are that Hazel will be able to catch up to her peers as much as possible and be able to have her own independence. I hope one day that we will have her symptoms more under control and there won't be too much that needs to be done on a daily basis.

What books/podcasts/TV shows/films/resources have you found relatable, inspiring and/or helpful as a parent carer?

I’ve loved listening to The Rare Life podcast. It gives me information about things I never knew about – and just hope for the future.

You can follow Hazel's journey on Instagram and Facebook .

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