Jimmy  Darts

SB Mowing

Pattie Gonia

Little Miss Flint

Kalina Silverman

Samuel Weidenhofer

Patriotic Kenny Foundation

Ben Saunders - Flawless Cleaning

The Dogist

Peter Bond

Amy Jandrisevits

Ask Uncle Jack

That Good News Girl

Tess Bohne

FowlMouthFarmer

Latonja and Taylor Richardson

Officer Richard Craig

Flavor Flav

John Wolfe

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

<div>Later this year, I’ll be running the London Marathon.
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<div>I was lucky enough to get a ballot place, and I was focused on just completing it without any unflattering footage of my running face being broadcast on BBC1.
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<div>Then, earlier this year I discovered that some of my friends have been going through something I couldn’t begin to comprehend and I wanted to support them. I am therefore using the opportunity to contribute in a small way to the fundraising efforts for Emily and Gus’s beautiful two-year-old daughter, Leni.
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<div>Leni has been diagnosed with Sanfilippo Syndrome Type B (MPSIIIB) – a rare and severe neurodegenerative genetic condition. 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>Sanfilippo Syndrome is unimaginably cruel. 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, 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. Sanfilippo is relentless and leaves nothing untouched.
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<div>You can read more about it at Leni’s <a href="https://www.gofundme.com/f/lenis-lifesaving-treatment" target="_blank" rel="noreferrer noopener">main funding page</a> but it is a condition that no child should have to go through.
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<div>There is currently no approved cure. However, there is a promising experimental enzyme replacement treatment that may become accessible this year. Emily and Gus are working tirelessly to try to secure access to treatment for Leni, and funding is part of what is standing in their way.
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<div>With Leni’s condition weeks and months really matter so the issue is urgent.
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<div>There will be large sections of the marathon I am not going to enjoy. But it will make it slightly easier to know I’ve helped towards the most worthwhile cause I could think of. I would be amazingly grateful if you could help me to support them to raise additional funds for Leni, and awareness for other children suffering with the condition.
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<div>All funds raised through this page will go directly to Emily and Gus’s main fundraising efforts. Thank you for taking the time to visit this page.
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London4Leni

<div>On the 12th April I'll be running <strong>42.2km in the 2026 Brighton Marathon</strong> to raise funds to save Leni.
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<div>Last year, my childhood friend Emily and her husband Gus were faced with a heartbreaking diagnosis for their two-year-old daughter Leni - 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>.
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<div><strong>Time is against us, and we need your help to save Leni.</strong>
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<div>Life-saving treatment may be available to her this year, but we need to urgently raise funds for her to access this. With Leni’s condition <strong>every day matters and time is running out to save her 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 Syndrome is unimaginably 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>Like most of the world, Emily and Gus had never heard of Sanfilippo Syndrome until very recently, and it is now part of their every waking moment and has ripped their world apart. 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 no treatment and no cure</strong>, but there are promising experimental treatments on the very near horizon that have already been proven to be incredibly effective. Everyone is working very hard to make this treatment urgently accessible to those who need it, and Leni's parents will do whatever they can to get Leni and other children access to the treatment that they desperately need, but at the moment it is just out of reach.
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<div>Time is working against Leni. <strong>With Leni’s condition weeks and months matter as toxic waste builds up in her tiny body every single day</strong> and the damage cannot be reversed once it is done.
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<div>The difference between her getting access to this treatment now and in a year's 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 now or never for Leni.</strong>
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<div>It is every parent’s worst nightmare to be told that their child is going to die, and that is the haunting reality that Leni's parents are faced with if she cannot get access to treatment and fast. This truly is her only hope.
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<div>Please donate if you can, or if you can't please share, and help us to save Leni.
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<div>Follow: <a href="https://www.instagram.com/saving_leni" target="_blank" rel="noreferrer noopener">Saving Leni</a>
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<div>All donations will be added to Leni’s <a href="https://www.gofundme.com/f/lenis-lifesaving-treatment" target="_blank" rel="noreferrer noopener"><strong>primary gofundme campaign here</strong></a><strong> </strong>
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<div>More information here about <a href="https://curesanfilippofoundation.org/what-is-sanfilippo/" target="_blank" rel="noreferrer noopener">Sanfilippo Syndrome</a>
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Brighton Marathon for Leni's Life-Saving Treatment

Emily 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><i>Leni loves to run, and some of our wonderful friends are running marathons to raise funds and awareness for Leni to access treatment that will hopefully mean she can keep running. Every donation and share is another step closer to life-saving treatment for Leni:

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<li><i><b><a href="https://www.gofundme.com/london4leni" target="_blank" rel="noreferrer noopener">London4Leni</a> - The London Marathon run by Declan

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<li><i><b><a href="https://www.gofundme.com/f/brighton-marathon-for-lenis-livesaving-treatment" target="_blank" rel="noreferrer noopener">Brighton4Leni</a> - The Brighton Marathon run by Nikki

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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 there are promising <strong>experimental treatments on the very near horizon</strong> that have already been proven to be incredibly effective. Everyone is working very hard to make these treatments urgently accessible to those who need it. <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</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 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 <a href="https://curesanfilippofoundation.org/" target="_blank" rel="noreferrer noopener"><strong>Cure Sanfilippo Foundation</strong></a> who are the only charity dedicated to Sanfilippo Syndrome and 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 <a href="https://www.instagram.com/saving_leni" target="_blank" rel="noreferrer noopener"><strong>@saving_leni</strong></a>, TikTok <a href="https://www.tiktok.com/@saving.leni" target="_blank" rel="noreferrer noopener"><strong>@saving_leni</strong></a>, 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>. 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</strong> <strong>Leni’s</strong> <strong>life.﻿</strong>



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Leni’s Life-Saving Treatment

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Emily Forrester

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Leni’s Life-Saving Treatment

£255,608 raised

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Brighton Marathon for Leni's Life-Saving Treatment

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Emily Forrester

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Leni’s Life-Saving Treatment

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