Maddie's Joy: An Angelman Journey

Cameron Nix joined the podcast for Episode 21 and talked about navigating the first year of his daughter's diagnosis.

Madelynn Joan passed away on August 30, 2023. Many of you reached out to us to convey that you would like to be there but could not make the prayer service or funeral. This was Adam's eulogy that he read at the prayer service.

Having an Angelman Syndrome diagnosis can be a lonely process. I've found that sharing Maddie's story has opened the hearts and minds of many people outside of our family.

Maddie went through her first IEP meeting. Since Maddie has Angelman Syndrome, these Individualized Education Plans will be updated year after year. Hear how our first one went.

A quick preview of episode 18 will be all about Maddie's first IEP meeting. I'll go over how it went, how I prepared, and what I wish I would have done differently.

Having a child with multiple specialists is hard. It's even harder when you have to adapt to a new provider who doesn't know all of the ins and outs of Angelman Syndrome or your child.

In episode 16 of Maddie's Joy: An Angelman Journey, I discuss how a new phrase caused me to look inward. Being a parent to an Angelman Syndrome child can be hard. I discuss some of my shortcomings as a parent and how I have worked to resolve them.

Aaron Ferguson was kind enough to share his experience as a sibling of an Angelman individual. We discuss how he maintains a strong relationship with his brother as well as some of his experiences along the way. Aaron also has written about his experience in the Wisconsin State Journal. If you have not read his opinion piece, please check it out below. Aaron Ferguson: Seeing the joys and struggles...

Due to some audio issues, I recycled a vlog post that I recorded before the podcast was even released. I talk about my transition from being a newly diagnosed Angelman father to accepting Maddie's diagnosis.

I just give a quick update on what has been happening with our family and when you can expect the next blog and podcast.

Kitty Murphy who is the National Special Events Director for the Angelman Syndrome Foundation joined the podcast to discuss the upcoming 2023 Angelman Syndrome Foundation Walk. Kitty touches upon what to expect from the ASF's biggest fundraiser of the year, and also how some of your donations are changing lives of individuals with Angelman Syndrome.

Being a special needs parent can be difficult. Over the past few weeks I've been feeling especially frustrated by Maddie's Angelman Syndrome diagnosis. I do some reflection on the things that frustrate me the most about this syndrome.

Micah Huegel joined the podcast for episode 11. Micah is a pediatric physical therapist with Mary Free Bed in Grand Rapids who is certified in neurodevelopmental techniques. He touches on best therapy practices and gives some advice to parents who are struggling to navigate the healthcare system.

In Episode 10 we discuss what keeps me up at night. There are major hurdles that we will have to overcome, especially in regards to Maddie's future. 

The Medicaid redetermination moratorium is set to expire on April 1st. We talk about what this means and how you can prepare.

Episode 8 focuses on what Angelman Syndrome is. We go into the genetics of Angelman Syndrome and some common symptoms of Angelman Syndrome. We also discuss how rare Angelman Syndrome is compared to other syndromes.

Maddie's Joy: An Angelman Journey podcast is back on February 3rd. We'll be going back to basics and talking about what Angelman Syndrome is, and how rare it is compared to other syndromes. 

Sleep issues affect 20-80% of children with Angelman Syndrome. Based on my experience, that number is on the higher side. See some simple tips that can make a world of difference in your child's life.

On today's episode I build upon last week's episode and talk about caregiver burnout. I talk about the article "Why Self-Care Is Essential to Parenting" by Juliann Garey. I hope you enjoy this episode. Don't forget to subscribe, comment, and rate the podcast

In Episode 5 I describe how I built a community of support around our family. 

We visited an Angelman Syndrome specific clinic for the first time. We detail our experience at Children's Hospital Colorado.

We went to the Angelman Syndrome specific clinic in Denver this week. Here's just a preview of what's to come in the next week.

The Angelman Syndrome Foundation CEO Amanda Moore joined the podcast to talk about a variety of resources available to caregivers of all ages.

In this episode I take you through Maddie's road to diagnosis. I also discuss the advice that shook me from my post diagnosis fog.

In this episode I discuss Rebecca Pender's top ten list A Rare Mom's Advice. I apply this to the Angelman Syndrome community. This is a great listen for anyone whose child is newly diagnosed with a syndrome or disease.