McKenna

McKenna

Having triplets plus one in one year changed my life in more ways than I ever thought possible, but it had been a long-time dream of mine and I was up for the challenge.

McKenna seemed to be about the same as the other babies until about age 2 when I saw that she was not meeting some milestones or stringing words together as quickly. I noticed that she fluttered her eyes and seemed to have a bit of a struggle "checking back in" after her eye flutters. I took her to a neurologist, who said there was "nothing wrong with my little girl" but I knew deep in my heart that he was wrong and I continued taking her to doctors including a psychologist, geneticist and many others over the next year. Finally, I found some information on the internet and a light bulb went off. I was pretty sure McKenna had Epilepsy and took her back to the first doctor, demanding that he order an EEG and MRI. He did and within a few days I found out my hunch was correct; McKenna had Epilepsy. My chaotic life became more challenging because I had spent years trying to get McKenna diagnosed and now I'd spend much longer than that trying to get her to the best place possible. I worried about how caring for her took away from my other kids, since there was only one of me.

McKenna started on the first of many medications that would help to control her seizures but unfortunately, these medications made it much harder for her to learn and she slept through a good part of the day. McKenna spent weeks in the hospital during this time, trying to monitor her seizures. She also had to have blood work regularly and struggled to keep down many of the meds. I watched helplessly as McKenna fell more and more behind in school and now, as many kids with Epilepsy do, she had an IEP at school and was in Special Education, which is not an easy thing to navigate. I kept asking the doctors to try another drug, hoping to find one that wouldn't make her want to sleep the day away. McKenna was so tired all the time that she rarely initiated a conversation, she simply responded when spoken to. I assumed she was just a quieter kid at the time and not as chatty as her sisters. It was hard to watch McKenna fall years behind her triplet sisters, even though she had a strong desire to learn.
 
On the recommendation of her Doctor, I took her to UCLA and did some educational and genetic counseling. When I went back to hear the results, they shared with me that McKenna had CHD2, which was the cause of her Epilepsy. I started to cry, knowing that this would likely be a lifelong challenge and that learning would always be hard for McKenna. Kids with CHD2 are known to have intellectual challenges and learning often doesn't come easy. We had homeschooled McKenna for the past few years to try to help her learn as much as possible during her school after hours with intensive tutoring, she had finally learned to read, but Math may never come easy.
 
Since CHD2 is so rare, the doctors did not have a lot of information about the CHD2 variant, so I searched on Facebook to find a CHD2 group. It was there that I found another Mom, who had triplets and one of her triplets has CHD2 and Epilepsy. We made immediate plans to meet! The girls are a few years apart but have a real connection. I got tears in my eyes the first time they Face timed each other. McKenna hung up the phone, after speaking with Mackenzie and said, "It seems like we have a lot in common." I know how good it feels to find "someone like you".

McKenna has a light about her that is hard to describe; she smiles and laughs often and our family is amazed at the way she handles all of this. Never once has she said, "Why me?" Once she learned to read, she became an obsessive reader. Like most siblings, she argues with her sisters, and plays Minecraft with them. I smile as I see that her sisters learn from her "can do" attitude. I've never seen a kid try harder in so many ways.
I will spend quite possibly the rest of my life, advocating for McKenna and her care. It's what parents of kids with Special needs do. We would give anything to see our child thrive in life and get every opportunity given to everybody else.

Our family's wish is for McKenna to live as normal of a life as possible. She is, for now, somewhat oblivious to the challenges that lie ahead such as driving (people who have seizures cannot drive). Finding a cure for CHD2 would mean that McKenna could have a chance at living an independent life, one that is even more fulfilling. She deserves to live her very best life.

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CHD2 Heroes

Cora

It took a little longer for us to figure out that something was not right. How could we have.. known?

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Kolman

His journey starts all the back in January of 2017. When Kolman was 14 months old he had his first seizure. It was one of the scariest days of my life.

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Sophia

I’ll never forget the night I held her for what seemed like an eternity, while she was ..per..encing petit seizure clusters. It wasn’t the first time, but it was the worst we had

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Caleb

I remember experiencing what felt like a shiver shake in the tummy, the type of shake that.. someone would have when they feel a chill.

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Finlay

Whenever he was awake he would be dosing off. I now realize that he was having seizures.. but his eyes would be rolling into his head.

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Robert

Last year, I wrote about my admission into a very exclusive, special-invitation-only parent group that will define the rest of my life.

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Luca

When the Coalition to Cure CHD2 was formed, I wanted to help but was not sure how. I would not be any good at fundraising or technical support.

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Colin

Colin was born in April 2015 at 29.5 weeks, 10.5 weeks early. He is currently 5 years old.

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Emma

Emma is a unique yet important member of the CHD2 community because of the discovery of her ultra-rare genetic problem that is quite different from the typical case of CHD2

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McKenna

Having triplets plus one in one year changed my life in more ways than I ever thought possible, but it had been a long-time dream of mine and I was up for the challenge

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Janine

The journey of our daughter living with CHD2 started back in 2007 when she was 6 years old and seeing her eyes fluttering non-stop for minutes at a time, multiple times a day

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Savannah

When Savannah was approximately 6 months old, we noticed she wasn’t meeting her milestones and had a twitch/tic like tendency.

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Julian

The CHD2 Support & Research Facebook Group was one of the most meaningful groups I joined in 2019

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Aiden

Aiden, and his twin brother Logan, was born in the US in 2005. They were much wanted IVF babies and were a blessing (and a handful) from day one

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Kate

She was born at my parents’ house as I had a horror of hospitals, having quite recently given birth to an anencephalic baby that died at birth in one

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Lucas

When I was pregnant with Lucas, things were great...until his 20 week anatomy ultrasound. The tech noticed his kidneys were a little large.

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Angel

I could not have chosen a better name for my son. An angel from the day he was born, who came to teach us lessons of life and love to his parents and siblings, to give us new ways of understanding and facing life

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Sam

I was born on February 17, 2010 and I am super excited for my birthday! I remember when I was a baby, 15 months old, when I started having quick arm movements that I could not control.

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Charlotte

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