Parents of 3-year-old girl diagnosed with 'childhood Alzheimer's disease' speak out on heartbreaking symptoms

A young girl's parents are opening up about their toddler's rare condition in a bid to raise awareness about it.

Last year, three-year-old Rowan Begbie from Knoxville, Tennessee, was diagnosed with something called Sanfilippo syndrome, a rare condition that affects less than 200,000 people in the US.

The genetic metabolism disorder causes a change in a single gene, and makes a child's body unable to break down certain carbohydrates, KidsHealth explains, which leads to problems with the child's brain and nervous system.

Because of the impact it has on the cognitive function in particular, Sanfilippo syndrome is often referred to as 'childhood Alzheimer's'.

Symptoms of the rare condition usually become notable between the ages of two and six years old – which was the case with Rowan.

There is no cure for Sanfilippo syndrome, but Rowan is currently undergoing a clinical trial in North Carolina. Her parents say that only 12 kids across America are receiving it.

Rowan's dad Bryan said to WATE: "We drive there the afternoon before infusions, then we have a full infusion day from 7:00 a.m. to 5:00 p.m. and then we drive home. We couldn’t be happier with the team of physicians and nurses that care for her."

The Begbies have set up a charity in the wake of Rowan's diagnosis last year called the Rowan Tree Foundation of East Tennessee. On its website, Rowan's parents detailed the symptoms she first started getting and when.

"When Rowan was 18 months old, our concerns of speech delay, comprehension, and hearing grew, so she was enrolled in Tennessee's early intervention program," they said.

"Rowan's hyperactivity and fixations are a challenge because it makes her a flight risk. She needs constant supervision to ensure her safety. Her spatial awareness and coordination also create fall problems, which brings bumps, bruises, and scratches on a regular basis."

Rowan Begbie, 3, was diagnosed with Sanfilippo syndrome last year (WBIR Channel 10)

Rowan is also susceptible to ear and sinus infections 'due to constant drainage'. The youngster has had ear tubes put in to relieve fluid build up.

As to what first made her mom and dad think that she might have Sanfilippo syndrome, a concerned mother reached out to Bryan and Blair after seeing photos of Rowan online.

After the health concern was brought to their attention, they looked into the condition further and Rowan as later diagnosed with Sanfilippo Type A.

According to KidsHealth, other signs of the rare condition include: large head size, respiratory infections, ongoing diarrhea, headaches, sleep problems, behavior issues that can look like those caused by autism, and compulsive behaviors and hyperactivity.

It adds that more severe symptoms are seizures, severe cognitive problems, and progressive loss of motor skills.