‘You Have To Keep Going’: Mom Is Committed To Caring For Her 6-Year-Old Daughter With Dementia

Feb 14, 2023 by apost team

The best kind of parents will always be the ones who will be there for their children no matter what happens – and that includes accepting them for who and what they are, flaws and all. For instance, some children are born with disabilities or health conditions. Of course, it’s normal for parents to expect their babies to be born healthy. But what if that’s the case? Should the child be given away? Whatever the case may be, parents hope the best for their children, even if it means they may struggle at times.

In September 2022, two parents from North Carolina proved their unconditional love for their child with dementia as they did everything that they could to save her.

Ashley and Jason Haywood welcomed their little girl Sadie Rae Haywood in March 2016. But just three months after her mom had given birth to her, she was diagnosed with Sanfilippo Syndrome, which is defined as “a rare, progressive, and fatal neurodegenerative disease” that affects 1 in 70,000 children. It is described as similar to Alzheimer’s disease, only it affects children.

While Sadie will gain skills as she grows, she is expected to lose them eventually as her age progresses. On top of losing the skills that she will acquire in life, she will also suffer from seizures and movement disorders.  

But what makes Sadie’s condition even more heartbreaking is that the chances of her surviving in her teens are slim as she is expected to die before she can even enjoy her adult life.

There is still no FDA-approved treatment that could help cure Sadie’s condition. But her parents remain hopeful as more research is being conducted, including clinical trials.

Sadie’s parents revealed that most children diagnosed with Sanfilippo start to lose words and become hyperactive. 

Thankfully, the enzyme replacement therapy at the University of North Carolina (UNC) hospital, for which Sadie enrolled in 2019, helped slow down the progression of her condition. But sadly, it ended in April 2021.

“I get that it’s part of life, and business decisions happen all the time,” Ashley told Fox 8 in an interview. “But you have kids’ lives at stake. So it’s more than just a business decision. It’s lives.”

The enzyme replacement brought promising results as it not only made the lives of Sadie and five other children involved in the clinical trial more bearable, but it also helped improve their condition.

The Haywoods then tried to reach out to drug companies to pick up the enzyme replacement therapy but were unsuccessful, much to their disappointment. But they are determined to stop irreversible damage from happening to their daughter and the lives of other children who are suffering from Sanfilippo Syndrome.  

“It’s been a really big roller coaster ride with her diagnosis, but you can’t stop,” Ashley said. “You can’t give up hope. You have to keep going for them.”

As Sanfilippo Syndrome can cause rapid degeneration, Ashley and her husband could only hope for another trial for Sadie. While time is the enemy, Ashley said she wouldn’t give up on her child and would continue advocating for her.

“Nobody knows your kid better than you do, so you have to be their voice,” Ashley said.

“You advocate for them. You do everything that you can whatever the disease is even if it’s not a disease. Just special needs kids in general. Just advocate at school, at the doctor’s office, everywhere. And don’t give up,” she added.

apost.com

What can you say about the determination of Sadie Rae Haywood’s parents to save her life? Would you do the same thing for your own child? Let us know what you think, and pass this on to your family and friends who might find this story interesting!