10k Swim For BPAN

DISTANCE UPDATE!

WE ARE NOW DOING 20K! We will hit the 10k target after our next swim so wanted to make it even further!

After 3 swims we have done 5600m!

Swim 4 was 2900m, Total so far is... 8500!!!!

From the 16th June until the 16th July we will be swimming as a family to try and raise awareness and vital funds for Action for BPAN.

Our family consists of;

Dhekelia (myself & mum)

Charlie (my husband & dad)

Jay (12)

Peyton (7)

We came across Bertie's page a couple of months ago, his mum Emilee was trying to raise awareness around the rare condition her beautiful boy Bertie has, BPAN.

BPAN wasn't something we had ever heard of before, but the more we kept seeing gorgeous Bertie pop up on our feeds the more we spoke about it and the more we felt compelled to try and do something to raise awareness.

With the permission from Emilee we have shared Bertie's story below and their TikTok page.

We have set the target at £1000 and we really hope we can reach this to help Action for BPAN continue their efforts in creating the gene therapy that is so desperately needed.

We will keep you updated with our swims and the distance we have achieved each time. If we hit the 10k early we will continue to swim to see how far we can get!

If you are in a position to donate, please do, but if not please share the page and Bertie's story to help raising awareness around BPAN.

Berties Story - Shared with permission from his wonderful mum Emilee!

Bertie was born on the 28th of February, 2021.

As Bertie grew, his family started noticing he wasn’t hitting his milestones like other babies. At nine months, he couldn’t sit, roll, or babble. Later, seizures began.

But through every challenge, Bertie has shown such determination. He’s learned to roll, to bum shuffle across the room, to wave, and he even says “mum.” Every single step has been hard fought, and every one has been a victory.

Bertie was later diagnosed with BPAN—Beta-propeller Protein-Associated Neurodegeneration. It’s a cruel, rare, and terminal condition caused by a gene mutation. Without treatment, it slowly takes everything away. Bertie was never supposed to make it through pregnancy. But he did. He fought his way here. He is a miracle.

Bertie is so much more than a diagnosis. He is pure love. He is laughter. He is light. He has taught his family patience, kindness, and how to communicate without words. He smiles the biggest smile despite every challenge life throws his way. All he knows is love—and that love touches everyone who meets him.

There is hope. Action for BPAN is funding groundbreaking gene therapy research that could save Bertie’s life. This isn’t a dream—it’s real, it’s happening, and with enough support, it can reach children like Bertie in time. The goal is to raise £2.3 million in total to help fund this therapy.

This is why we need your help. Every single penny donated goes towards saving Bertie’s life—and the lives of other children living with BPAN. You can be part of his miracle.

Bertie's mum Emilee is just incredible, she is doing absolutely everything she can to help raise awareness and funds for BPAN. We would like to encourage everyone to check out her educational videos on what BPAN is on TikTok.

You can follow along here - @BertiesBpanJourney