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Posted on 04/20/2026 9:31:06 AM PDT by Morgana
The parents of a girl with 'childhood dementia' have revealed why they felt they had no choice but to terminate their much-wanted second pregnancy after discovering their unborn child also has the disease.
Leni Forrester, now two, was born seemingly healthy to parents Emily, 33, and Angus, 35, from London.
But when a close family member underwent genetic testing six months ago, their lives changed forever when results showed the family carried a recessive gene which can cause Sanfilippo syndrome, a rare genetic disorder dubbed childhood dementia.
The degenerative disease causes children to gradually lose all the motor skills they've learnt - such as walking, talking and eating - by the time they reach their teenage years.
There is currently no cure for the disease, and most of the children diagnosed with the devastating condition die by the time they reach their mid-teens.
The chances of both parents carrying the gene are slim, but after noticing that Leni was already exhibiting some of the classic symptoms - including speech delay, hearing difficulties and unusually bushy eyebrows - Angus also underwent testing.
Thankfully, the test came back negative and the couple began trying for a second child.
But just weeks later, the parents were informed the test results were wrong, triggering the 'most intense grief' imaginable.
Leni was diagnosed with the condition in October 2025, and just two weeks later, the couple found out that they were pregnant.
Ms Forrester said: 'We knew this pregnancy would either be the very best or very worst possible news.
'Navigating the heartbreak of Leni's diagnosis and our new world as parents to a child with very complex medical needs, as well as facing all the challenges any parents faces of having a toddler and trying to give her the best life possible.'
(Excerpt) Read more at dailymail.co.uk ...
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They could move to Canada...
You asked and I gave you a logical reason. Because you didn’t like it then maybe you figure it out yourself.
Is that 200,000 Worldwide or just the U.S.?
Government financing could help the family a lot.
Not to worry. There are plenty who will make such a judgement. None of them facing the problem of course.
They knew the odds, gambled and lost trying again. If this was about money, they wouldn’t get their money back, but it’s ok to take a life?
Tough diagnosis.
Until all the institutions in the country were emptied parents were helped by the state institutions which would care for the tough 24 hour care diagnosis.
The kids with the IQs in single digits.
The kids who could never even sit up
The kids who were immensely violent and self abusive, think enucleated eyes, chunks bitten out of their bodies...
The kids who are too big to be managed without a group to help with the violent outbursts
The kids who need 24hour 7day a week physical care.
and others
We had that level of state care to help families. Now the lie is that this care is provided in the home. Except it is not and parents have to do it all.
Tough when there are no alternatives for help.
My pregnant friend’s doctor told her that they could not hear her baby’s heartbeat for months, so they said she was even going to have a MONSTER RETARDED BABY OR ABORT IT!! The baby girl was born PERFECTLY and is now 48 years old!!
They had no choice.
Sure.
Such a horrible misfortune for these parents and their living child. Then, first to be told it was safe from the degenerative disease, then soon later to be told the initial test was in error.
According to the info provided, they were hoping for a healthy second child. I can’t fault their subsequent decision. Watching a newborn start out healthy only to know it will begin the process of inexorable human body failing before it reaches first grade would too much to bear.
We were told that our unborn child was very sick, so we did the only humane thing and had her murdered.
Makes perfect sense, NOT!
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