"Let thy food be thy medicine, and thy medicine be they food."
- Hippocrates
Drake and Vivian went through years of trial and error when it came to their diet. Unfortunately, for NKH patients, there is no medically directed diet to follow.
Glycine is the molecule we have to watch for, and it is in everything that is good.
Glycine, in literature, is even given to children/patients that have seizures to help mitigate negative side effects.
So what happens when your babies can't break it down?
What happens when all known medical journals, and physicians, now say that it is the main damaging molecule for your child.
But it is in everything...
Food,
Condiments,
Protein powders...baby formulas.
I once found a company in Ireland that had an "NKH formula" available. They only had a few hundred canisters of dry baby formula that was created without the glycine molecules in them.
I took the company straight to our metabolic team and they moved mountains to get us 2 cans of formula to try.
It gave us enough formula for about three days of food, for one child, before we ran out. We contacted the company about more, but unfortunately, because the children living with NKH are so few in the world, the company told us they had no intent of producing more product like this.
Even if we could come up with the funding to keep it going, it just wasn't profitable to tie up their production space for a formula that would only serve 500 kids worldwide.
Drake used to vomit almost every time we fed him. He was a fragile, pale little thing that never had any energy.
His skin was almost the color of paper due to the "medicine" we had to give him every 4-6 hours, and he was always so tired he could barely hold his eyes open most days.
What energy he did have the seizures always stole from him. They would come with such force and intensity that one grand mal seizure (he could have 20-30 a day) would knock him out for an entire hour.
His bowels stayed so backed up and compacted that when he would go to the bathroom, he would scream and kick his legs when you would try to change his diaper.
Most of the time, we had to assist him to get him to go to the bathroom which meant physical massage, coffee enemas, or multiple suppositories.
I think because it was so painful when he went, he fought to hold his movements.
We went to all the GI doctors. I was so frustrated when I left the last of many appointments with nothing more that a peice of paper with two prescriptions written on it.
One prescription was to stop him from throwing up, the second was to make him go to the bathroom.
I remember asking the doctor specifically if it had anything to do with what he was, or was not, eating. Could there be any correlation with diet that could help us bring him relief?
He shrugged his shoulders, and then dismissed my questions. His reply, "some kids just struggle with constipation more than others. Take the meds I gave you, and we can increase the dose if you don't see any releif within the next few weeks."
I started looking into side effects of the medicines prescribed. Due to lack of knowledge on our disease, every drug or vitamin, we use has to be broken down into its molecules of action and then I have to research those known interactions to try to piece together the possible correlations or negative side effects of a potential new therapy.
After hours of searching, the two prescriptions had more side effects than the current symptoms Drake was dealing with. We decided it was in his best interest to try to find other ways to help alleviate the discomfort and free his digestion.
That led to a deep dive into the gut and how our foods interact with it. We studied the correlations and the latest understanding about our microbiome and how every part of your body interacts with your gut.
I once begged a professor at Clemson to let me audit her microbiome lecture online as it was around covid and the college had many restrictions in place. I was not far enough in my academic studies yet, and learning her material meant I had to get special permissions from the teacher.
While we were learning academic knowledge we also have worked with countless dietitians across the state, to try to understand more about nutrition. How we can bring in certain foods to encourage the benefits we were wanting, and remove certain foods to help negate the negative effects of their metabolic waste.
I'll never forget when the leading ketogenic specialist in the state of had been working with our neuro team here in Greenville trying to help lead Drake and Vivian's diet. She was being zoomed in to the inpatient appointment from MUSC, and she flat out told me that I need to reach out to someone at a national level because my children where too severe for her to lead.
Too severe to care for....
Too sick to fight for.....
Too sick to heal....
All their life, Drake and Vivian, have been in that category no one wants to find themself in.
All their life, physicians by the dozens have politely declined helping us because, "their case is just too severe."
But God.
Everytime I start to question why and how to move forward, Father alwasy shows up.
Everytime a dietician or a physician or a scientist even, pass off the kids becuase they are just too far gone, too sick to help....if forces us to find the answers.
Over the last seven years Drake, and Vivian, have showed us what works and what doesn't work for them.
Their body is so responsive, and we take daily journals of what did work, and what didn't work. So that when God allows for their to be a positive response to something, we are quick to receive it and explore the new discovery.
That is what makes your support for their birthday fundraiser so important. These funds go directly to helping us keep the foods, and herbs in their diet to that we can continue to help find new answers they need to help their bodies continue to heal.
We do not have it all figured out, God reveals new things every day, and for that we are so grateful.
But we do know that what we have seen is our bodies are made to heal.
We are created in our maker's image and our bodies are made to heal!
Please, if your budget can spare $10, $15 to help us meet their fundraising goal that would help us tremendously keep their needs met and their nutrition fueling their little bodies forward.
Drake and Vivian's birthday fundraiser is happening right now and you can make an impact! Click here to go straight to our donation page.
