Natalie Ladly on parenting a child with special needs & the importance of supporting research

Natalie Ladly is the president and fundraising chair for CDKL5 Canada. She lives in Heathcoate, a town outside of Collingwood, Ontario, with her husband Eric and their three children: Brynn, Reece, and Cullen. Brynn has CDD, a rare disease that prevents the brain from developing normally. She was diagnosed with the disease at nine months old, and since then, Natalie has been dedicated to raising awareness and funds for research. 

Natalie is also a member of the CDKL5 Canada board, which gives her a sense of purpose and the ability to make a difference. Natalie is grateful for the support of Dr. Eubanks, a scientist who is dedicated to researching CDD and making a real impact in the lives of those affected by the disease. She believes that collaboration between the scientific community and patient advocacy groups is crucial for rare diseases, as it allows for a more holistic approach to treatment and care. Overall, Brynn's journey with CDD has taught Natalie to take things one day at a time and to cherish the silver linings in life.

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.

The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.

Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil

To get in touch, email us at krembil@uhn.ca or message us on social media:
Instagram - @krembilresearch
Twitter - @KBI_UHN
Facebook - https://www.facebook.com/KrembilBrainInstitute

Thanks for listening!

Transcript

My name is Natalie Ladly, and I'm the president and fundraising chair for CDKL5 Canada. We live in Heathcoate, which is just outside the Collingwood area in Ontario, and we have three children. Our youngest daughter, Brynn, has CDLK deficiency

Disorder, also known as CDD. She's seven. And then we have our oldest daughter is Reece. She's 12 and Cullen is ten. CDKL5 five is a mutation in the CDKL5 gene, which essentially stops the production of the protein that's essential for normal brain development and the development of neurons.

And so the impact of that is: children who have intractable epilepsy, and neurodevelopmental delays so it can impact cognition, motor skills, vision and speech. Brynn was born full term. She was a healthy baby. I had a healthy pregnancy and around six weeks of age, she started having seizures. She was put on some anti-epileptic meds and by the time she was four months old she was on three different anti-epileptics with no relief from seizures. So, we went through with pet CT scans, and MRIs and there was no abnormalities, at which point the neurologist suggested that we do genetic testing. It was right around nine months old when we got the diagnosis, which was unfortunate timing for us because she happened to be having a little honeymoon period. And so she'd been seizure free for three weeks. And we had convinced ourselves that she just had this random infant epilepsy and she'd outgrown it, and then, of course, we got the devastating news that she had CDD.

Getting the diagnosis was really tough. I happened to be alone at the hospital when we got the news. So all of a sudden you're receiving this information and you're looking at your baby, who at the time I thought, “Oh, you know, she's doing great.” You know, she wasn't. hitting her milestones, but, you know, it becomes your new normal and you just sort of think, well, she's having a really good day and, you know, she's doing good based on how she's been doing in general. And all of a sudden. You find out that, you know, your child is likely never going to walk and never going to talk and will never live independently. And, you know, it was crushing.

Like it was so hard for me to wrap my head around how this doctor could know with certainty all of these things about my child and you know, and then all of a sudden you hit like this wall of grief because all of these hopes and expectations you have that you don't even realize you have, you know, you realize that none of those are going to happen.

And so it was it was pretty rough the first couple of days but then I came home and my husband like, you know talked about it and you know, after going through like the vast amount of symptoms that are associated with CDKL5, we realized that the only say to really deal with that was just to take one day at a time and just, you know, with the same attitude that I, you know, I walked into the hospital thinking she's doing great. Meanwhile, you know, she was a nine-month-old who couldn't sit up and was having. seizures previously. And, you know, like we knew she was behind, but just take it one day at a time. And that's how we can move forward. And so that's kind of what we've been doing. We just address each symptom as it comes up and try not to get overwhelmed with the caregiving aspect of it.

Brynn is a spunky seven year old. If you were to see her in an arena or at a soccer game, which is where we spend most of our time you would probably think that she just, you know, is oblivious to the world around her. She's seven years old. She's in a wheelchair.

She's nonverbal. She's has a feeding tube. On initial glance she doesn't look like she' very engaged. But everyone who knows her well, I always know when a teacher knows her well, because they say, oh, she's such a drama queen. And I'm like, okay, that's Brynn. So somehow, without speaking a word and she doesn't gesture. She really has very limited ways of communicating but she manages to capture everybody's heart. And Eric and I always say that's her superpower, is that she charms. Everybody that she meets.

She loves her friends, she's in school, she's included in her Grade 2 classroom and participates in as many different activities as she can, and she goes horseback riding as part of her hippotherapy. Hippotherapy as a type of physiotherapy. So Brynn sits on the horse, she rides frontward, she rides backwards, she lies down on her stomach and on her back. And it not only provides her impact that she doesn't get because she doesn't walk, but it also allows her hips to move in the motion with the stride of the horse when it walks, moves her hips in the way that mimics walking. And so it's really good for her joints. And it also gives her the feeling of the stepping over motion that she doesn't get from walking.

She loves being in her swing and in the swimming pool. And, you know, there's an abundance of activities that she thoroughly enjoys participating in. She just misses a lot of the sort of typical activities that a seven-year-old would be doing.

Brynn communicates a lot with her eyes she gives a stink eye If she's not happy. With you far more often than she gets a smile, if I'm being honest. And she often if she's excited, she'll kick her legs out or she'll sometimes squeal. She will give us smiles occasionally, but more often than not, she's just quite content. And she's a very mild mannered little girl.

She doesn't complain. She never cries. And we joke that she's the easiest to get along with because she doesn't talk back. And I say to the other kids, yeah Brynn is our are favourite because she never gives us any grief about anything.

So Reese and Cullen both have really close relationships with brand, but they interact with their really differently. So, you know, they both are. Affectionate. And care about her and care for her. But Reese, who's 12, is much more practical in her approach. She likes to help. She sets up. Feeds for brand. She'll change her. She makes. Her medicine. She's very hands on in that respect. And then Cullen is like a sensitive soul who just will like, climb on the couch with her and smuggler and reader a million Peppa Pig Books. And so it's interesting, they have totally different relationships, but I think she values both. You know, she gets. To engage with both of them and just in different ways.

Brynn is currently on three anti-epileptic medications and she also takes CBD oil, cannabinoid oil, which helps control her spasms. She's having approximately two seizures a day that vary in length. Right now between four. And 5 minutes, which is good compared to this time last year when she was having her average seizure length. Last year was between ten. And 12 minutes, and that for us, we find it's the most difficult part of CDKL5 five. There's a huge array of symptoms and they all require different levels of care. But the seizures are the part that impacts our life the most. It sort of stops whatever activities you're doing. If we're having dinner or when, I have to get up and leave the table. If we're in public, it doesn't bother us, but it bothers everybody who's around us. It makes people uncomfortable, which, you know is never a great feeling for for us or for Brynn. It steals all of Brenda's joy. When she's having a good day with no seizures, she's bright eyed and she's engaging. And, you know, you can really feel like you're communicating with her and she's reciprocating that. But the seizures just steal the show like she sleeps and she's