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Kalina Silverman / @makebigtalk on Instagram

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Ask Uncle Jack

That Good News Girl

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Khloe

<div><strong><em>200km. 72 hours. Marching the toughest terrain in the UK. </em></strong>
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<div><strong><em>Time is against us and we need to help save Leni.</em></strong>
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<div>My beautiful goddaughter Leni was diagnosed with Sanfilippo Syndrome, also known as Childhood Dementia, just days before her second birthday in October 2025. Like most people, I had never heard of it before, but it is devastatingly cruel. Sanfilippo Syndrome is caused by a tiny genetic error that prevents the body from breaking down complex sugars, which then build up in the cells and brain and become toxic over time.
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<div><strong>Without treatment, Leni will gradually lose the ability to walk, talk, play, and laugh. Her parents, my best friends Gus and Emily, will have to watch their daughter slowly fade away. </strong>The life expectancy for affected children is their early teens. There is no cure and currently no approved treatment - Leni and her parents are faced with an uphill battle to get her the help she so desperately needs.
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<div><strong>There is hope, but it is a race against time.</strong>
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<div>A US developed enzyme replacement therapy is one clinical trial away from approval and may be available early through an Expanded Access programme. If successful, it could stop further damage to Leni’s brain.
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<div>In January, Gus &amp; Emily launched an urgent campaign to raise awareness and funds to give her the best possible chance of accessing this experimental treatment. 
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<div>Four of us who love Leni dearly are taking on a gruelling uphill challenge to help raise the funds and awareness to make Leni’s uphill battle a little easier.
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<div>From 4-6 March, we will be running/hiking/marching/crawling a 200km ultra through the Brecon Beacons in Wales. <strong>The route will comprise multiple iconic marches known in military circles as some of the toughest in the UK. This deliberately removes recovery periods, placing emphasis on endurance, resilience, navigation and sustained teamwork.</strong>
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<div>Every minute matters for Leni. Toxic waste builds up in her tiny body every single day and the damage cannot be reversed once it is done. Time is working against us. Ideally, we would train and condition for such a demanding physical and mental challenge, but <strong>we do not have time. Leni does not have time.</strong>
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<div><strong>Donate if you can. Share if you cannot. Help us save Leni. </strong>
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<div><strong>#Hills4Leni</strong>
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<div><em>All donations will be added to Leni’s primary gofundme campaign: </em><a href="https://www.gofundme.com/lenis-lifesaving-treatment" target="_blank" rel="noreferrer noopener"><em>here</em></a>
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<div><em>Leni’s instagram: </em><a href="https://www.instagram.com/saving_leni?igsh=MWR4NHA0aGk4ZDZjMQ%252525253D%252525253D&amp;utm_source=qr" target="_blank" rel="noreferrer noopener"><em>@saving_leni</em></a>
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<div><a href="https://curesanfilippofoundation.org/what-is-sanfilippo/" target="_blank" rel="noreferrer noopener">More information about Sanfilippo Syndrome</a>
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#Hills4Leni

Angus Forrester

<div>Our beautiful little Leni, who is just two years old and so full of love and life, has been diagnosed with an extremely rare and very severe rapidly neurodegenerative genetic condition called <strong>Sanfilippo Syndrome Type B (MPSIIIB)</strong>, also known as<strong> Childhood Dementia</strong>. Life-saving treatment may be available this year, but we need to urgently raise funds for her to access this. With Leni’s condition every day matters and <strong>time</strong> <strong>is</strong> <strong>running</strong> <strong>out</strong> <strong>to</strong> <strong>save</strong> <strong>her</strong> <strong>life</strong>.
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<div>Children with this condition have a defect in a single gene that prevents them from breaking down a sugar molecule called heparan sulfate, causing toxic waste to build up in the brain and body.
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<div><strong>Sanfilippo</strong> <strong>Syndrome</strong> <strong>is</strong> <strong>unimaginably</strong> <strong>cruel</strong>. Children develop relatively ‘normally’ with no obvious symptoms until they are around two years old, then over a short amount of time they lose all skills once learned, experience severe behavioural challenges, extreme hyperactivity, insomnia that can last for days, seizures, a total loss of cognitive and motor function, and a premature death in their early to mid teens, as well as many other horrific symptoms. <strong>Sanfilippo is relentless and leaves nothing untouched</strong>.
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<div><strong>Leni will lose the ability to walk, talk, play, laugh, eat, and eventually her life to this condition.</strong>
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<div>Some of our wonderful friends are completing gruelling challenges to help raise the funds and awareness needed to prevent this from happening. Every donation and share is another step closer to life-saving treatment for Leni:
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<li><strong><a href="https://www.gofundme.com/f/running-100km-to-save-leni" target="_blank" rel="noreferrer noopener">100km4Leni</a> - Thames Path Challenge by Michael</strong>
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<li><strong><a href="https://gofund.me/e0f214a16" target="_blank" rel="noreferrer noopener">3Peaks4Leni</a> - The 3 Peaks Challenge by Becky</strong>
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<div>A fundraising event is also taking place on Saturday 30th May to raise funds and awareness for Leni, which everyone is welcome to attend!
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<li><strong><a href="https://gofund.me/997a00ea2" target="_blank" rel="noreferrer noopener">Funday4Leni</a> - Family Funday by Kids Planet Sevenoaks</strong>
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<div>Like most of the world, we had never heard of Sanfilippo Syndrome until very recently, and it is now part of every waking moment and has <strong>ripped our</strong> <strong>world apart</strong>. No parent should have to go through this heartbreak, and no child should have to suffer with this syndrome.
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<div><strong>There is currently</strong> <strong>no treatment and no cure</strong>, but since launching Leni’s campaign there are now multiple promising <strong>experimental treatments on the very near horizon</strong> that have already been proven to be incredibly effective and everyone is working very hard to make these treatments urgently accessible to those who need it.
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<div><strong>We will do whatever we can to get Leni and other children access to the treatment that they desperately need, but at the moment it is <em>just</em> out of reach - partly due to lack of funding.</strong>
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<div>With Leni’s condition weeks and months matter as <strong>toxic waste builds up in her tiny body every single day</strong> and the damage cannot be reversed once it is done. Time is working against us. 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. <strong>It’s</strong> <strong>now</strong> <strong>or</strong> <strong>never</strong> <strong>for</strong> <strong>Leni</strong>.
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<div><strong>It</strong> <strong>is every parent’s worst nightmare to be told that their child is going to die after years of suffering</strong>, and that is the haunting reality we are faced with if Leni cannot get access to treatment and fast. We will do anything we can to save our baby girl, and that starts with raising awareness and funds to get her access to life-saving treatment. <strong>This</strong> <strong>truly</strong> <strong>is</strong> <strong>her</strong> <strong>only</strong> <strong>hope</strong>.
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<div><strong>We know that the best chance of us getting Leni and other children access to this treatment is by campaigning and fundraising</strong>, but the exact pathway is unclear.
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<div>We are engaged with all involved parties from around the world and will update you all as soon as we know more.
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<div>If we are unsuccessful in accessing these specific treatments then funds will go towards any future treatments that may become available, to providing for her complex medical needs, and to improving her quality of life wherever we can. We will also donate funds to <strong>Great Ormond Street Hospital </strong>who are providing Leni with truly world-class care, and the <strong>MPS Society</strong> &amp; <strong>Cure Sanfilippo Foundation</strong> who have been a huge support for us and many other children and families.
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<div>We will be sharing updates on Leni’s journey on her Instagram <strong><a href="https://www.instagram.com/saving_leni" target="_blank" rel="noreferrer noopener">@saving_leni</a></strong>, TikTok <strong><a href="https://www.tiktok.com/@saving.leni" target="_blank" rel="noreferrer noopener">@saving.leni</a></strong>, and here on her GoFundMe page.
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<div>We have been completely overwhelmed by the love and support we have received since Leni’s diagnosis and we know that <strong>she is so loved</strong>.
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<div><strong>Leni's story has received extensive coverage in the national press. We've shared some highlights below where you can learn more about her condition and her fight to access life-saving treatment:</strong>
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<li><a href="https://www.thetimes.com/life-style/parenting/article/childhood-dementia-experience-vhr880drt" target="_blank" rel="noreferrer noopener">The Times</a>
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<li><a href="https://www.independent.co.uk/news/health/sanfilippo-childhood-dementia-leni-forrester-b2946332.html" target="_blank" rel="noreferrer noopener">Independent</a>
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<li><a href="https://www.mirror.co.uk/news/uk-news/our-little-girl-2-dementia-36903755" target="_blank" rel="noreferrer noopener">The Mirror</a>
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<li><a href="https://www.dailymail.com/health/article-15702695/Our-daughter-childhood-dementia-no-obvious-signs.html" target="_blank" rel="noreferrer noopener">Daily Mail</a>
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<li><a href="https://people.com/2-year-old-girl-diagnosed-rare-childhood-dementia-11932006" target="_blank" rel="noreferrer noopener">People Magazine</a>
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<div>We know that it is a big ask, but please donate if you are able, and please share Leni’s story and GoFundMe page everywhere you can to help raise the awareness and funds needed to <strong>save Leni’s life</strong>.
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Leni’s Life-Saving Treatment

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Angus Forrester

Angus Forrester

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Leni’s Life-Saving Treatment

#Hills4Leni