Kent family in 'fight against time' to save toddler with dementia
Leni, just two years old, has been diagnosed with Sanfilippo Syndrome, also known as Childhood Dementia.
A family from Kent are urgently raising funds for their two-year-old daughter, Leni, who has been diagnosed with Sanfilippo Syndrome Type B, also known as Childhood Dementia.
Sanfilippo Syndrome is a devastating neurodegenerative condition that causes toxic waste to accumulate in the brain and body, leading to the gradual loss of cognitive and motor skills.
The Forresters have launched a campaign for life-saving treatment opportunities and are appealing for public donations to access emerging experimental therapies that have shown promising results.
Speaking to us, Leni's mother Emily said:
"Leni is, at the moment, a typical two year old.
"She is very funny, full of energy. She is very hyperactive and that's kind of part of her condition, but she is just an absolute joy to be around.
"Everyone that meets her falls in love with her instantly.
"She has some challenges. She has hearing loss and a speech delay. But beyond that, she's pretty much a typical child at this point. And she'll continue to develop until she's three, four years old.
"And then at that point, children start to regress and they lose all the skills that they have already learned. And that regression is extremely rapid.
"Speech is usually the first thing to go, experience severe behavioural challenges, insomnia that can last for days at a time.
"Some of these children don't sleep for kind of three, four days at a time and how families are expected to cope, I'm not sure.
"And then she'll experience severe behavioural difficulties, insomnia, and then she'll start to lose her motor skills, the ability to walk, play, run. Everything that she loves to do, she'll lose all of that.
"So we're kind of racing against that decline.
"But we're also in this really crucial moment for Leni, where at this stage where she hasn't experienced any regression and she's still developing and she's doing incredibly well.
"The treatments could be transformative and she could go on to lead a near normal life.
"But if she doesn't receive a treatment in time and she starts to regress, it will massively improve the quality of her life, but the brain damage can't be reversed, and it can't be repaired.
"So any damage that's already done, it's kind of too late to restore that.
So we're kind of, for Leni at this point, we're in this real race against the time to give her a near normal life or one of kind of the most severe physical and mental disabilities you can imagine really."
Awareness
She added that while funds were a big issue, so was awareness around the condition:
"when we first found out about this condition, we'd never heard of it. And the more that you read about it, is so incredibly shocking and it is such a horrific diagnosis, but there is no awareness, there is no public policy to support it.
"There is just nothing in place for these families and children and we need awareness.
"Childhood dementia, of which Sanfilippo is 1, affects as many children as childhood cancer.
"But the difference in research, funding, everything else, treatment options is so vast and that difference is because of the awareness around it.
"Childhood dementia has a 0% survival rate.
"Every child will die of childhood dementia as it stands because there are no treatment options approved of any of the childhood dementias and that is because there is no awareness.
"And so driving this awareness of San Filippo but also broader childhood dementias because they all are very, very cruel conditions is absolutely crucial and is something that we are very, very determined to do."
Updates on Leni’s condition and fundraising efforts are being shared on Instagram and TikTok, as well as on their GoFundMe page.
If treatment cannot be accessed, funds will be used for Leni's medical needs, quality of life, and donations to Great Ormond Street Hospital, the MPS Society, and the Cure Sanfilippo Foundation, all of which have supported their journey.