{"id":541257,"date":"2026-04-20T15:46:13","date_gmt":"2026-04-20T15:46:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/541257\/"},"modified":"2026-04-20T15:46:13","modified_gmt":"2026-04-20T15:46:13","slug":"discovering-my-toddler-has-dementia-was-the-worst-moment-of-my-life-so-when-a-test-revealed-her-unborn-sibling-also-had-the-disease-we-had-no-choice-but-to-terminate-my-pregnancy","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/541257\/","title":{"rendered":"Discovering my toddler has dementia was the worst moment of my life… so when a test revealed her unborn sibling also had the disease we had no choice but to terminate my pregnancy"},"content":{"rendered":"

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.\u00a0<\/p>\n

Leni Forrester, now two, was born seemingly healthy to parents Emily, 33, and Angus, 35, from London.\u00a0<\/p>\n

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.<\/p>\n

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.\u00a0<\/p>\n

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.\u00a0<\/p>\n

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.<\/p>\n

Thankfully, the test came back negative and the couple began trying for a second child.\u00a0<\/p>\n

But just weeks later, the parents were informed the test results were wrong, triggering the ‘most intense grief’ imaginable.\u00a0<\/p>\n

\"Angus, <\/p>\n

Angus, (pictured left) underwent genetic testing when a close family member discovered they carried the rare gene\u00a0<\/p>\n

\"Heartbreakingly, <\/p>\n

Heartbreakingly, Leni was later diagnosed with the condition – but not before the couple had started trying for another baby\u00a0<\/p>\n

Leni was diagnosed with the condition in October 2025, and just two weeks later, the couple found out that they were pregnant.\u00a0<\/p>\n

Ms Forrester said: ‘We knew this pregnancy would either be the very best or very worst possible news.\u00a0<\/p>\n

‘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.’<\/p>\n

Ms Forrester had to carry the foetus for three months before it could undergo genetic tests in utero, which would reveal whether the baby would have the condition.\u00a0<\/p>\n

‘We tried to detach from the pregnancy and not get our hopes up – but as there was a 75 per cent chance that the baby would be unaffected, we couldn’t help but cling on to that hope,’ she added.\u00a0<\/p>\n

‘We desperately wanted to grow our family and want our future children to know Leni as she is today, and for her to know them.’<\/p>\n

\"Emily <\/p>\n

Emily was just two weeks pregnant when their lives changed forever\u00a0<\/p>\n

\"The <\/p>\n

The couple are desperate to give Leni siblings, but felt they had no choice to terminate the pregnancy knowing there is currently no cure for the disease\u00a0<\/p>\n

But sadly, in utero testing revealed their growing baby would also be born with Sanfilippo syndrome.\u00a0<\/p>\n

With this knowledge, the couple felt they had no other option than to terminate the pregnancy, and focus all of their efforts on Leni.\u00a0<\/p>\n

Ms Forrester said: ‘With no treatment options, no cure, a catastrophic prognosis and poor quality of life – how could we knowingly bring another child into the word with Sanfilippo syndrome?\u00a0<\/p>\n

‘We made the impossible decision to end the pregnancy, and I had a surgical termination a few days before Christmas.<\/p>\n

‘It was the most heartbreaking and difficult decision we have ever had to make. But we knew deep down there was no choice.’\u00a0<\/p>\n

She added:’ Unless you have received a catastrophic diagnosis like this for your child you cannot imagine the heartbreak and the devastation we felt in this moment.\u00a0<\/p>\n

‘I now truly know what it feels like for your heart to be ripped out of your chest.’\u00a0\u00a0<\/p>\n

Whilst there is currently no known cure for the neurodegenerative disease that is estimated to affect one in 200,000 births, a clinical trial for a potential treatment is expected to begin in the US later this year.<\/p>\n

\"'She <\/p>\n

‘She is a bundle of energy and everyone that meets her agrees that she is pure sunshine,’ Leni’s parents say\u00a0<\/p>\n

\"But <\/p>\n

But without access to treatment, they may only have years left with their daughter<\/p>\n

Leni’s parents are now calling on the UK Government to help fund the research so the trial could also include children like Leni.\u00a0<\/p>\n

Ms Forrester said: ‘With Leni’s condition, weeks and months matter as toxic waste builds up in her tiny body every single day and the damage cannot be reversed once its done.\u00a0<\/p>\n

‘Time is working against us. It’s now or never for Leni.’\u00a0<\/p>\n

Despite her condition, Leni’s parent’s describe their toddler as ‘a bundle of energy’ who loves to make people laugh.\u00a0<\/p>\n

But whilst they celebrate each new developmental milestone she hits, they know it’s a race against time to get treatment.\u00a0<\/p>\n

‘Our beautiful child who we are watching develop into an incredible little person and getting a glimpse of who she might become, will lose the ability to walk, talk, swallow laugh, eat, and eventually her life to this condition,’ her mother explains.\u00a0\u00a0<\/p>\n

‘The difference between her getting access to this treatment now and in a years time could be the difference between a potentially near-normal life and a significantly shortened life with the most severe mental and physical disabilities you can imagine.<\/p>\n

‘I cannot imagine a more cruel, catastrophic condition with a worse impact on the child or the families and friends who love them.\u00a0<\/p>\n

‘This is her only hope.’<\/p>\n

\"Alongside <\/p>\n

Alongside their fundraising efforts, Leni’s parents want to ‘make the most’ of the time they have with her: ‘Travel, go on adventures and make memories as a family that we can treasure for life’\u00a0<\/p>\n

The disease is inherited when both parents carry one copy of a defective gene that leaves the body unable to break down a substance called heparan sulfate – or cellular waste.<\/p>\n

Because the body can’t break down this toxic waste, it builds up in the brain and other organs, killing off cells.\u00a0<\/p>\n

Children with Sanfilippo syndrome also tend to have prominent, thick eyebrows and coarse hair, as well as full lips and nose.\u00a0<\/p>\n

In addition to speech and developmental delays, early symptoms include fast breathing after birth, larger head size, excessive body hair and sleep disturbances.\u00a0\u00a0<\/p>\n

Leni’s parents have already raised more than \u00a3360,000 in a bid to get Leni and other children access to potentially life-saving treatment.\u00a0<\/p>\n

The treatment works by delivering a missing gene into the patient’s bloodstream via stem cells, but getting started on the clinical trials requires a huge amount of funding.\u00a0<\/p>\n

They are also calling for newborn screening to help detect rare genetic conditions earlier and for more funding to accelerate treatments.<\/p>\n

While conditions like Sanfilippo syndrome affect a relatively small number of children, Mr Forrester says that taken in aggregate, ‘rare’ diseases have a much broader impact than many realise.<\/p>\n

‘When you group all these rare conditions together, they suddenly don’t become that rare.’\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"The parents of a girl with ‘childhood dementia’ have revealed why they felt they had no choice but…\n","protected":false},"author":2,"featured_media":541258,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[97,59,102,388,56,54,55],"class_list":{"0":"post-541257","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-dailymail","9":"tag-gb","10":"tag-health","11":"tag-london","12":"tag-uk","13":"tag-united-kingdom","14":"tag-unitedkingdom"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/541257","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=541257"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/541257\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/541258"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=541257"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=541257"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=541257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}