Leni Forrester, age 2, was diagnosed with Sanfilippo Syndrome in October 2025, according to multiple reports. Sanfilippo Syndrome is a progressive, incurable neurodegenerative disease that causes children to gradually lose motor skills like walking, talking, and eating, typically leading to death by the mid-teens. The exact symptoms Leni is currently exhibiting and how advanced her condition is have not been detailed publicly.
Leni's parents, Emily and Gus (or Angus), are from London. According to Daily Mail - Health, Emily Forrester described navigating the heartbreak of Leni's diagnosis and the challenges of parenting a child with complex medical needs. The couple faced a difficult decision when a second pregnancy revealed the fetus also had Sanfilippo Syndrome. Emily Forrester described making the impossible decision to terminate the pregnancy, calling it the most heartbreaking choice they have ever made.
Meeting Leni and her mum, Emily, really stayed with me. Leni is such a beautiful, happy little girl, and you can just feel how loved she is. Spending time with them was incredibly emotional, because it's so hard to understand how something like this can happen to such a young child. Emily is amazing so strong and so devoted but no parent should have to fight this hard just to get their child the treatment they need. It's heartbreaking. If sharing Leni's story can help raise awareness or make even the smallest difference, then it's so important we all come together and support them. Children like Leni deserve every chance at life. I'm sending all my love to Leni and her family.
There is currently no cure and no UK-approved treatment for Sanfilippo Syndrome. Leni's parents are urging the UK government to fund research and clinical trials for Sanfilippo Syndrome treatments, according to major media. The current status of the UK government's response to these funding requests is unclear. What specific treatment might be available that they are trying to access also remains unknown.
To raise awareness, popstar Jesy Nelson met Leni and her mother Emily for a photoshoot focused on rare conditions, according to major media. Jesy Nelson has twins who were diagnosed with Spinal Muscular Atrophy (SMA). According to Daily Mirror - 3am Showbiz, Jesy Nelson described meeting Leni and Emily as incredibly emotional, saying no parent should have to fight this hard for treatment. According to Daily Mirror - 3am Showbiz, Emily Forrester described Jesy as super inspirational and a genuine, lovely person, and noted that Leni loved the cameras during the shoot.
She's trying to pull everyone along with her and like shine a spotlight on the difficulties that everyone faces. So she's super inspirational but also just a really genuine, lovely person.
Another case highlights the disease's severe progression. Sophia Scott, age 15, has Sanfilippo Syndrome and may not live past her 16th birthday, according to major media. After her diagnosis, Sophia's parents were given a single sheet of paper and advised to make the most of their time with her, according to major media. According to BBC News, Darren Scott described being told their daughter is going to die and feeling completely shattered and alone, with instructions to make memories. How many children in the UK are affected by Sanfilippo Syndrome and what support systems are available to families are not specified in reports.
A clinical trial for a new treatment for Sanfilippo Syndrome will begin in the US later this year, according to major media. This offers some hope, but questions remain about treatment access and timing. According to Daily Mirror - News, Emily Forrester emphasized the urgency of treatment for Leni, noting that early intervention is crucial.
Leni loved it. She's such a little diva. She absolutely loved the cameras. It was a great day.
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.
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. 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.
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? We made the impossible decision to end the pregnancy, and I had a surgical termination a few days before Christmas. It was the most heartbreaking and difficult decision we have ever had to make. But we knew deep down there was no choice.
We didn't have any concerns there was something remotely wrong. There were some delays on her markers, but we didn't think anything this huge. We were basically given a life sentence, this progressive incurable disease was going to take our only child. We were given a piece of A4 paper, and essentially told to make the most of the time we had.
We were told to make memories.
We were collapsed outside - we were told our daughter is going to die. In that moment we both were broken, our lives had been shattered. We were in a complete state of shock and left feeling like what do we do now? Our life had changed forever and we felt alone.
We would look at Sophia, this perfectly happy little girl and think why her? Why? And how is this all going to change? We just kept looking at every little thing she did and thought will that be the last time she does that? Or will this be the last time she says that?
All your dreams for your child's future are taken away. To be told that she has this condition, and there is no treatment and no cure and no support… it’s completely earth-shattering.
Every day that passes without treatment, this toxic waste is building up in our child’s body. If we can’t get treatment, she will suffer the most awful physical and mental decline you can imagine and then die in her early to mid-teens.
Early treatment is key for these children. The damage cannot be reversed once it’s done. If she has to wait six months, that could mean she can no longer talk. If she waits 12