Charlotte

Charlotte

Charlotte was diagnosed with absence epilepsy at 2 years old due to her frequent eye rolls. We have been lucky enough to have been under Scottish Rite’s care the last 2 years as it has been a roller coaster of emotions. We have gone through various medicines, tirelessly spinning our wheels to find something that worked for our Charlotte. A year and a half ago we believed we found the perfect medicine for Charlotte. Charlotte started Prek4 at the most amazing school with the most amazing teacher and support team who have watched Charlotte and informed me of every little thing. Her teacher quickly realized Charlotte would space out in class and completely forget what she was doing. Thankfully she was so on top of it and brought this to my attention every time she noticed. We brought her back into Scottish Rite and both her neurologist and I were in agreement the medicine was no longer working and she sent Charlotte’s labs off for genetic testing to see if she had another form of epilepsy. We got the results back on April 5th and never could’ve believed that she was diagnosed with CHD2. We don’t know what the future holds for our sweet girl but we are going to do everything we can to ensure she is in the best care.

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CHD2 Heroes

Cora

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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

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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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