Gregory Robinson
A six-year-old girl who is suffering from childhood dementia is determined to live life to the fullest after being diagnosed with the degenerative disease.
Sadie Haywood was diagnosed with Sanfilippo syndrome which causes childhood dementia and Alzheimer's.
The youngster is determined to not let the disease hold her back from enjoying an action-packed life with her mum, Ashley Haywood, 35 and auntie, Jessica Haywood, also 35.
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Jessica says that while most people only think of the elderly when they hear about dementia, Sanfilippo syndrome is a type of childhood dementia that takes away a little piece of her niece each day.
Sadie was diagnosed at three months old and while her mum's pregnancy was 'totally normal' and Sadie was born at full term, she had to be airlifted to a children's hospital 'immediately' because she was having difficulty breathing.
"We were grateful when she got to go home for the first time at 10 weeks old. However, Ashley knew something was off," she says.
"We knew that a distant relative had a child with Sanfilippo syndrome but wasn't too worried because it is so rare, around 1 in 80,000.
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"Just to be cautious, we had Sadie tested for Sanfilippo and sadly learned that she had the disease.
"It's heartbreaking and beautiful. We live with the constant knowledge that Sadie is being taken from us little by little each day.
"Sadie has done so many things that we never thought she'd be able to do. We didn't know if she'd ever walk or talk.
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"Every little achievement she reaches is such a big deal for us and we don't take anything for granted."
Sadie, from Charlotte, North Carolina, has been skiing and indoor skydiving this year so far and her next big adventures will be surfing and water skiing.
Her family are intent on giving Sadie the best experiences as well as doing more of what Sadie loves such as trips to the beach, swimming, playing outside, and spending time with loved ones.
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"Sadie has the cognitive level of a three-year-old so thankfully she doesn't understand much about her condition,” Jessica said.
"Most people that have met Sadie say they've never seen a happier child. She started smiling when she came home from the hospital at three months old and hasn't stopped.
"It's almost like the cruel start to life made her grateful for everything that came after.
"No matter what the circumstances are, she is present and happy and we could all learn a lot from her.
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"Sadie has the most amazing smile and laugh and we hear it all the time.
"Whenever someone she loves comes to visit, she gets so excited. Sadie is hilarious and likes to make others laugh and she frequently makes herself laugh."
Jessica also shares how Sanfilippo syndrome is fatal, typically in the teenage years, without treatment.
She added: "The only treatments available today are through clinical trials.
"Outside of the clinical trial, Sadie has regular visits with her paediatrician, geneticist, neurologist, ENT, eye doctor, cardiologist, dentist, and an autism specialist.
"She also has weekly visits with her occupation, physical, and speech therapists along with a tutor.
"It's the little things that most people would never think of that cause the daily challenges for us.
"Does the playground have adaptive equipment that Sadie can use? Is there a bathroom that makes changing a big kid possible?
"Sadie can be wild and loud so sometimes we get stares. We try to be respectful of others when we're in public but we're also not going to yell at our child that doesn't know any better nor keep her locked up at home.
"As the disease progresses, children with Sanfilippo get aggressive.
"At times when she's frustrated, Sadie may hit but she doesn't mean anything by it.
"She just doesn't know how to express how she's feeling fully. But for the most part, Sadie is the happiest kid we've ever met.
"We hope she can keep her joy as she starts to struggle more."