Jimmy  Darts

SB Mowing

Pattie Gonia

Little Miss Flint

Kalina Silverman / @makebigtalk on Instagram

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><br />
</div><img class="text-editor_textEditorImage__43_GE" alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/104636087_1780688100730520_r.jpg" width="100%" />
<div>Eliyas is a 16-month-old little boy, full of joy, love and determination. He has recently been diagnosed with TUBB4A related leukodystrophy, a rare and life-limiting neurological condition.
</div>
<div><br />
</div>
<div>As a group “Eliyas's Angels,” we are doing everything we can to give him hope. We are raising funds to access a specialist gene therapy programme in the United States that may help change the course of his condition.
</div>
<div><br />
</div>
<div>In support of this, we are walking 10,000 steps every day throughout July to raise awareness and vital funds for his treatment, travel, and ongoing care.
</div>
<div><br />
</div>
<div><br />
</div>
<div>We are walking for Eliyas’s future—every step, every donation, every share matters.
</div>
<div><br />
</div>
<div><br />
</div>
<div>And follow his story on Instagram
</div>
<div><a href="https://www.instagram.com/eliyastubb4a" target="_blank" rel="noreferrer noopener"><a href="https://www.instagram.com/eliyastubb4a/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.instagram.com/eliyastubb4a/</a></a> and message us to join the cause
</div>
<div><br />
</div>
<div>Thank you
</div>
<div>Eliyas's Angels xx
</div>

Eliyas's Angels - Walk4Eliyas - help us save his life

<div>Help Give Eliyas the Chance Every Child Deserves
</div>
<div><br />
</div>
<div>Our beautiful son, Eliyas, is just 18 months old.
</div>
<div><br />
</div>
<div>He loves giggling at silly animal noises, watching the world with quiet curiosity, and studying our faces with deep concentration. He is determined, full of joy, and the centre of our world.
</div>
<div><br />
</div>
<div>Behind his beautiful smile, Eliyas is living with an ultra-rare genetic condition called TUBB4A-related leukodystrophy.
</div>
<div><br />
</div>
<div>This devastating neurological disorder affects the development of myelin—the protective coating around nerve fibres that allows the brain to communicate with the rest of the body. Without healthy myelin, children can struggle to develop movement, coordination, speech
</div>
<div>and other essential skills. Many experience progressive neurological decline, severe disability and a significantly shortened life expectancy.
</div>
<div><br />
</div>
<div>When Eliyas was first diagnosed, our world fell apart.
</div>
<div>What we believed was a simple developmental delay became every parents worst nightmare. Genetic testing confirmed that Eliyas carries a disease-causing variant in the TUBB4A gene—a condition so rare that only a handful of children worldwide are known to be living with it.
</div>
<div><br />
</div>
<div>Yet every single day, Eliyas reminds us what courage looks like.
</div>
<div>He works tirelessly through physiotherapy to achieve milestones that most children reach naturally. Holding his head a little longer, rolling independently, making a new sound or reaching for a toy are victories we celebrate with overwhelming pride. Every achievement
</div>
<div>represents countless hours of determination and hope.
</div>
<div><br />
</div>
<div>As his parents, we refuse to stop fighting for him.
</div>
<div>That fight has led us to a pioneering personalised antisense oligonucleotide (ASO) gene therapy programme at Rush University Medical Center in Chicago, USA. Eliyas has been assessed and accepted for this investigational treatment, which has been designed specifically
</div>
<div>for children with his genetic condition.
</div>
<div><br />
</div>
<div>This programme offers something we never thought we would have:
</div>
<div>Hope.
</div>
<div><br />
</div>
<div>Hope that the progression of this devastating disease may be slowed.
</div>
<div>Hope that more of Eliyas's abilities can be preserved.
</div>
<div>Hope that he will have the opportunity to achieve milestones that once felt impossible.
</div>
<div><br />
</div>
<div>For us, this treatment is about so much more than medicine. It is about giving our son more time to learn, more time to grow, more time to laugh, and more time to experience childhood.
</div>
<div><br />
</div>
<div>Because TUBB4A-related leukodystrophy is a progressive condition, time is incredibly precious. Early intervention offers the greatest opportunity to protect neurological function before irreversible damage occurs. Every month matters. Unfortunately, this specialised treatment is not available through the NHS and must be funded privately.
</div>
<div><br />
</div>
<div>We are therefore asking for your support to help cover:
</div>
<ul>
<li> Clinical administration and treatment at Rush University Medical Center, Chicago.
</li>
<li>Medical monitoring and specialist follow-up throughout the two-year treatment programme.
</li>
<li> Intensive physiotherapy, hydrotherapy, specialist equipment and rehabilitation to maximise Eliyas's development alongside treatment.
</li>
<li> Essential travel and accommodation costs associated with accessing this highly specialised care.
</li>
</ul>
<div><br />
</div>
<div>We are committed to complete financial transparency and will provide regular updates throughout Eliyas's treatment journey.
</div>
<div><br />
</div>
<div>Eliyas's Story in the Media
</div>
<div><br />
</div>
<div>We are incredibly grateful to the journalists, broadcasters, charities and organisations who have helped share Eliyas's story. Their support has raised vital awareness of TUBB4A-related leukodystrophy and helped our campaign reach families, communities and supporters across
</div>
<div>the UK and beyond.
</div>
<div><br />
</div>
<div>You can read and watch Eliyas's journey here:
</div>
<div><br />
</div>
<div> The Sheffield 1000 – Eliyas: Life Saving Treatment
</div>
<div><a href="https://thesheffield1000.org/eliyas-life-saving-treatment/" target="_blank" rel="noreferrer noopener"><a href="https://thesheffield1000.org/eliyas-life-saving-treatment/" target="_blank" class="" rel="nofollow noopener noreferrer">https://thesheffield1000.org/eliyas-life-saving-treatment/</a></a>
</div>
<div><br />
</div>
<div> BBC News – Parents race to raise funds for son&amp;#39;s life-changing treatment
</div>
<div><a href="https://www.bbc.co.uk/news/articles/ckg49l82zglo" target="_blank" rel="noreferrer noopener"><a href="https://www.bbc.co.uk/news/articles/ckg49l82zglo" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.bbc.co.uk/news/articles/ckg49l82zglo</a></a>
</div>
<div><br />
</div>
<div> Yorkshire Live – Facebook feature on Eliyas&amp;#39;s fundraising campaign
</div>
<div><a href="https://www.facebook.com/yorkshirelive/photos/a-west-yorkshire-couple-are-desperately-trying-to-raise-200000-to-get-their-baby/1488210220016589/" target="_blank" rel="noreferrer noopener"><a href="https://www.facebook.com/yorkshirelive/photos/a-west-yorkshire-couple-are-desperately-trying-to-raise-200000-to-get-their-baby/1488210220016589/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/yorkshirelive/photos/a-west-yorkshire-couple-are-desperately-trying-to-raise-200000-to-get-their-baby/1488210220016589/</a></a>
</div>
<div><br />
</div>
<div> People Magazine – UK Mom Says Moving Is the Only Chance to Save Her Son
</div>
<div><a href="https://people.com/u-k-mom-says-moving-is-the-only-chance-to-save-her-son-16-months-11995276" target="_blank" rel="noreferrer noopener"><a href="https://people.com/u-k-mom-says-moving-is-the-only-chance-to-save-her-son-16-months-11995276" target="_blank" class="" rel="nofollow noopener noreferrer">https://people.com/u-k-mom-says-moving-is-the-only-chance-to-save-her-son-16-months-11995276</a></a>
</div>
<div><br />
</div>
<div> Run For All – One-Year-Old Eliyas Fights Rare Condition as Mum Takes on 10KChallenge
</div>
<div><a href="https://www.runforall.com/community/people-stories/one-year-old-eliyas-fights-rare-condition-as-mum-takes-on-10k-challenge/" target="_blank" rel="noreferrer noopener"><a href="https://www.runforall.com/community/people-stories/one-year-old-eliyas-fights-rare-condition-as-mum-takes-on-10k-challenge/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.runforall.com/community/people-stories/one-year-old-eliyas-fights-rare-condition-as-mum-takes-on-10k-challenge/</a></a>
</div>
<div><br />
</div>
<div> ITV News Calendar – Toddler is one of only 12 children worldwide with rare genetic condition
</div>
<div><a href="https://www.itv.com/news/calendar/2026-06-03/toddler-is-one-of-only-12-children-worldwide-with-rare-genetic-condition" target="_blank" rel="noreferrer noopener"><a href="https://www.itv.com/news/calendar/2026-06-03/toddler-is-one-of-only-12-children-worldwide-with-rare-genetic-condition" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.itv.com/news/calendar/2026-06-03/toddler-is-one-of-only-12-children-worldwide-with-rare-genetic-condition</a></a>
</div>
<div><br />
</div>
<div> BBC Look North – Television feature
</div>
<div><a href="https://youtu.be/CG6dWlU6sGk" target="_blank" rel="noreferrer noopener"><a href="https://youtu.be/CG6dWlU6sGk" target="_blank" class="" rel="nofollow noopener noreferrer">https://youtu.be/CG6dWlU6sGk</a></a>
</div>
<div><br />
</div>
<div>We are deeply thankful to every journalist, producer, photographer and organisation that has helped amplify Eliyas's voice. Their kindness has enabled thousands more people to learn about this devastating condition and has given our family hope during the most difficult time
</div>
<div>of our lives.
</div>
<div><br />
</div>
<div>Today, we are asking for your help.
</div>
<div>Every donation, no matter the size, brings Eliyas one step closer to the treatment that could change the course of his life.
</div>
<div>If you are unable to donate, sharing Eliyas's story with your friends, family, workplace, school, faith group or community could help us reach someone who can.
</div>
<div><br />
</div>
<div>Our greatest wish is beautifully simple.
</div>
<div><br />
</div>
<div>To give our son the chance to grow.
</div>
<div><br />
</div>
<div>The chance to learn.
</div>
<div>The chance to laugh.
</div>
<div>The chance to play.
</div>
<div>The chance to build a future.
</div>
<div>The chance every child deserves.
</div>
<div><br />
</div>
<div>From the bottom of our hearts, thank you for standing with our family, believing in Eliyas, and giving us hope.
</div>
<div><br />
</div>
<div>With love and gratitude,
</div>
<div>Jasmin, Hasnain &amp; Eliyas
</div>

Eliyas needs life saving treatment

<div>Hi, I’m Abi.
</div>

<div><br />

</div>

<div>Eliyas is our nephew, and he means absolutely everything to our family.

</div>

<div><br />

</div>

<div>He’s just one year old, and he’s already facing more than most of us ever will.

</div>

<div><br />

</div>

<div>In January 2026, on his first birthday, our world changed forever. What should have been a weekend full of celebration became something none of us could have prepared for. My sister Jasmin and her husband Hasnain had to share the devastating news that Eliyas had been diagnosed with a rare genetic condition called TUBB4A-related leukodystrophy.

</div>

<div><br />

</div>

<div>I will never forget that moment.

</div>

<div><br />

</div>

<div>This condition affects how myelin develops in the brain, impacting movement, coordination and development. There is currently no cure, and without treatment, his future and ability to live a full life is uncertain.

</div>

<div><br />

</div>

<div>But there is hope.

</div>

<div><br />

</div>

<div>A pioneering gene therapy programme in Chicago, United States, could give Eliyas the chance to slow the progression of his condition and protect the abilities he has worked so hard to build through intensive physiotherapy.

</div>

<div><br />

</div>

<div>This treatment is unfortunately not offered by the UK’s NHS. Early intervention is critical, and right now, we are racing against time to raise enough funds in the coming months to give him that chance.

</div>

<div><br />

</div>

<div>Watching my sister and her husband navigate this has been incredibly emotional. The strength, resilience and love they show for Eliyas every single day is something I can’t even begin to put into words. They are doing everything they possibly can to fight for their son’s future, and I have so much respect for the sacrifices they are making, including relocating across the world for his treatment.

</div>

<div><br />

</div>

<div>So we wanted to do something too.

</div>

<div><br />

</div>

<div>That’s why we’ve decided to take on a challenge to raise funds for his treatment:

</div>

<div><br />

</div>

<ul>

<li>The <strong>32km</strong> (<strong>20</strong> <strong>mile</strong>) <strong>Edale Skyline</strong> hike in the Peak District, a challenging 9-12 hour route, that my partner Mac and I will be completing together (mid–end of May)  ⛰️

</li>

</ul>

<div><br />

</div>

<div>This is completely outside of our comfort zone, and something we have been training hard for in the last few weeks.

</div>

<div><br />

</div>

<div>But nothing compares to what Eliyas is going through every single day.

</div>

<div><br />

</div>

<div>This is our way of standing beside our family and fighting for him in the only way we know how.

</div>

<div><br />

</div>

<div>If you’re able to donate, even a small amount, it would mean so much. £10, £15 anything at all helps bring Eliyas one step closer to the treatment that could change his future.

</div>

<div><br />

</div>

<div>Please note that all funds will go directly towards Eliyas’ main GoFundMe page:

</div>

<div><a href="https://gofund.me/3505b7404" target="_blank" rel="noreferrer noopener">Eliyas GoFundMe</a> - please consider reading the full story here too.

</div>

<div><br />

</div>

<div>If you can’t donate, sharing this page helps more than you know.

</div>

<div><br />

</div>

<div>You can also follow Eliyas’ journey outside of the fundraiser, on Instagram &amp; TikTok: @eliyastubb4a, where I’ll be sharing updates on his progress, our events, and the challenges along the way.

</div>

<div><br />

</div>

<div>Thank you for supporting him, and for being part of this journey.

</div>

<div><br />

</div>

<div><br />

</div>

<div>Abi &amp; Mac 

</div>

<div><br />

</div>

<div>#EliyasTubb4A

</div>

<div><br />

</div>

<div><br />

</div>

<div><br />

</div><img class="text-editor_textEditorImage__43_GE" alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101269651_1774291614706622_r." width="100%" />

<div><br />

</div>

We’re Hiking 32km To Help Our Baby Nephew Eliyas

Paarul  Prinja

platform

Platform is iOS

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Platform is iOS v11.2.0 and above

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Paarul Prinja

Paarul Prinja

What they care about

Featured causes

Eliyas's Angels - Walk4Eliyas - help us save his life

Eliyas needs life saving treatment

We’re Hiking 32km To Help Our Baby Nephew Eliyas

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