Sanfilippo syndrome is one of the rare diseases affecting the brain and spinal cord. This disease, which begins to appear in young children, begins to develop developmental disabilities and loss of previously learned skills. In the later stages of the disorder, seizures and movement disorders may develop. Sadie Haywood, 6, was diagnosed with Sanfilippo syndrome, which causes childhood dementia and Alzheimer’s. Her 35-year-old mother, Ashley Haywood, and her aunt, Jessica Haywood, decided to provide all the facilities for the little girl to enjoy her childhood to the full.
THIS DISEASE TAKES A LITTLE PART EVERY DAY
Jessica says that while most people think of only the elderly when they think of dementia, Sanfilippo syndrome is a form of childhood dementia that takes away a small piece of their niece every day.
THEY WERE NOT CONCERNED BECAUSE THE DISEASE IS RARE
Sadie was diagnosed when she was three months old and while her mother’s pregnancy was ‘completely normal’ and Sadie was born just in time, she had to be airlifted to a children’s hospital ‘immediately’ because she was having trouble breathing. “We knew that a distant relative of ours had a child with Sanfilippo syndrome, but we weren’t too worried because it’s a rare disease that occurs around 1 in 80,000. Just to be careful, we had Sadie tested for Sanfilippo and unfortunately we learned that she has the disease.
“EVERY SMALL ACHIEVEMENT IS VERY IMPORTANT TO US”
“We live knowing that Sadie is being taken away from us little by little every day. Sadie has done so much that we never thought she could do it. We did not know whether he would walk or talk. Every little success he achieves is very important to us and we do not take anything lightly.”
DOESN’T KNOW MORE ABOUT THE CONDITION
In addition to giving Sadie the best experiences, her family wants to do more of the things Sadie loves, like going to the beach, swimming, playing outside and spending time with loved ones. “Sadie has the cognitive level of a three-year-old, thankfully she doesn’t understand much about her condition. Most people who meet Sadie say they’ve never seen such a happy child before. When she got home from the hospital at three months old, she started smiling and didn’t stop.” said
CAN GET AGGRESSIVE AS TIME GOES
Jessica also shares how Sanfilippo syndrome is typically fatal in her teenage years without treatment. “The only treatments available today are clinical trials. She also has weekly visits with a teacher with physical and speech therapists. Sadie can be wild and noisy, so we sometimes get stares. We try to be respectful of others when in public, but at the same time, we won’t yell at our child who doesn’t know any better or keep him at home. “As the disease progresses, the Sanfilippo kids get aggressive. She can hit when she’s angry, but that means nothing. She doesn’t know exactly how to express how she feels. But Sadie is the happiest kid we’ve ever met.”