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Drake F.

No sleep, no support, big problems.

It’s no secret that sleep is a basic biological need for all humans.

We all need it. We all function poorly without it. So what happens when you simply can’t get enough of it?

The average person can go 24 or more hours without sleep in the right circumstances without lasting harm. But if a person is deprived of sleep for longer than that, several mental and physical problems begin to develop.

The first signs of sleep deprivation are, no surprise, unpleasant feelings of fatigue, irritability, and difficulty concentrating. Then come problems with reading and speech, judgment, lower body temperature, and a considerable increase in appetite. 

If the deprivation continues, the worsening effects include disorientation, hallucinations, apathy, severe lethargy, and even social withdrawal.

That sounds like something to avoid at all costs, right? Let’s imagine for a moment that your sleep deprivation wasn’t caused by your own insomnia or health but through the care of a child who simply couldn’t sleep. 

Let’s also imagine that this child has a host of other complex and rare medical conditions that impact their well-being and needs throughout the day and night. It’s hard to fathom, right? And what if all those things were true and you had no resources or family help to support you through it? 

If that were true for you, then your story would mirror that of Meagan and Drake.

Drake just turned six years old last June. This boy with bright blue eyes and a wide smile is a fun and happy kid who loves sensory toys and an elephant stuffed animal he’s had since his birth.

In those short few years, he’s already bravely faced more challenges than most of us could handle. 

It started when he was around six months old, and Meagan noticed Drake wasn’t hitting some developmental milestones. 

“I would take him to the pediatrician for his wellness checks, and they had this checklist of milestones to read and review. I would scan the list and check off ‘No’ on many of them. It was really, really hard,” Meagan told us.

She knew in her gut that something was happening, but it would take years to start putting all the puzzle pieces together. 

First, Drake had a full-body MRI at age two that revealed a brain injury. Drake had suffered a brain bleed at birth that went undetected, and there had been no indication at the time that anything was amiss. 

Then, he underwent genetic testing.

“What I didn’t realize about genetics,” Meagan explained, “Is that some mutations people have don’t even exist yet. They haven’t been studied. So you don’t actually know what that mutation means. You have an answer without having an answer.

“With Drake, they don’t know how or if his mutations will affect him because he’s the only person with his mutations that have been detected.”

They’re still waiting for the genetic results they sought last February.

One mutation that did come back with some information is MECP2, or atypical Rett Syndrome. Typically, Rett Syndrome affects girls more than boys, comes with a shortened life expectancy, and causes complete loss of motor function, tube feeding, and more. 

Doctors don’t know what will happen with Drake because he doesn’t have the exact mutation in the MECP2 gene, and they have nothing to compare it to. 

Once he began having absence seizures, more questions emerged.

“We didn’t know he was even having seizures until they started getting longer,” said Meagan. “It was hard for them to tell at first because Drake was also diagnosed with autism. They thought it could be behavioral, like he was just ignoring us. But as they got longer, nothing would get him to snap out of it.

“He was having them all day, and we didn’t even know it.”

It’s so challenging because everything seems to fall into this cycle they can’t emerge from. Drake suffers from insomnia - intense, debilitating insomnia - and they’ve tried several different medications and even medical CBD to treat it. 

But given his young age, doctors can offer no real solution. The only options they have left are heavy medications (like sedatives) that aren’t good solutions for six-year-olds. 

Often, Drake and Meagan are just awake.

It’s hard to fathom how he has the energy to function, let alone attend therapy five times a week – but he does. They do. 

Meagan has tried resource after resource, scouring websites, and Facebook support groups in search of assistance. She added Drake’s name to the state waiver program waitlist, only to find out that the estimate on timing is 12 years. Twelve. Years.

“I posted in Facebook groups, asking, ‘How are you doing this? How are you surviving with Medicaid?’ Because that seems to be the answer for everything,” said Meagan. 

“Even something as simple as pull-ups are insanely expensive because they have to be ordered in a special size for him,” she explained.

As for family support, most of her immediate family lives out of state, but she had help from her dad, an amazing guy with a big heart for his daughter and grandson. But tragically, during a visit with Drake and Meagan last summer, he got up to take a shower and died from a fatal heart attack in her home.

They were in desperate need of a break. 

That’s where you come in. In one of her Facebook groups, someone answered her question about support and said, “Try Chive Charities.”

Meagan was looking for some new sensory items for Drake, including fiber optic curtains and an LED vibroacoustic corner ball pit, to bring him some more happiness and fun sensory experiences he loves. As with most things, though, the price tag was a deterrent. Thankfully, she turned to us.

Thanks to the support of our donor community, we were able to fully fund the purchase of Drake’s sensory items for a total impact of $5,899.

They were in desperate need of a break, and you helped give them one. We can’t thank you enough for being part of it with us.

Meagan and Drake represent so much of what our mission is about. Through all of the sleepless nights, unanswered questions, and difficult news, they continue to push forward and look for hope.

Sometimes, you just need that extra bit of help or person to turn to, and time and time again, our donor community has been there. When you look for hope, Chive Charities will help you find it. Thank you for making their lives - and our world - 10% happier. Join our movement and DONATE HERE.

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