Want to join me in making a difference?

Hi, I’m Hana and the proud mummy to

Eti. Eti is 7. He has an amazing big brother Arte and little sister Aya.

I’m raising money to benefit Genetic Alliance UK LTD, and any donation will help make an impact.

Thanks in advance for your contribution to this cause that means so much to us.

Genetic Alliance UK is an alliance of over 230 member organisations. We work together to improve the lives of the 3.5 million people in the UK with a rare, genetic or undiagnosed condition.

We advocate for quality care and access to the best treatments through our national campaign Rare Disease UK and family support network SWAN UK. 

Eti has had an incredible journey and is the most incredible, happy, brave boy.

We have spent 7 years as a family together supporting him with his differences. Eti has faced so much in his 7years, surgeries, scans, needles, test after test and having to face so many scary interventions and loads and loads of appointments. He is under 4 different NHS Trusts and has a wonderful team of healthcare professionals to help keep him safe and well. 

We have recently been to a large children’s hospital in London and specialist Genetics teams have told us that Eti has a very rare genetic change which, is likely to be the cause of his issues.

This cannot be proven yet as it’s so rare and not been studied enough. So this makes him a SWAN.

He has a S -syndrome W- without A - N- Name.

He has a collective group of symptoms but as of yet, no name to put to his condition.

This has been really hard as we have spent years searching for a diagnosis. A name to put to the issues. A name to enable us to explain to him what and why. But this never came.

After years of doctors trying to diagnose. Doing another test or investigation. On top of already trying to care for the issues he’s experienced such a drooling, coughing, chest infections, swallow difficulties. Low tone. Sleep disturbances. Fatigue. Hyper mobility. Vacant episodes and more. 

Throughout his journey Eti has always smiled. Maintained positive mindset and blown all of his medical teams away with his maturity and charm. He makes us laugh every day. 

Now after our recent appointment in London, we are coming to terms with the fact that we most likely will never receive a diagnosis. This has been really, really hard.

We discovered SWAN UK, through Genetic Alliance UK. An organisation which supports and provides more information to families like us. We have now joined a community of people who have had similar experiences, journeys, thoughts and feelings just like us. It has given us a space where we feel supported and understood. Families in similar circumstances to us.

We can now share stories. Worries. Ideas. Joys. Concerns. Happy times and feel connected.

It has been so uplifting to join this community. It’s really helped us to process all this complex information. We have been given lots of family resources. Support info. Videos. And joined a community. 

I feel really passionate about doing something positive for this organisation. Trying to help and give back. Even just a little. To help ensure they can carry on supporting other families in a similar position as I know how hard this has been for us.

Please if you can share even just a tiny amount, it will all help!

I will be running a 5k run in June…….! 

I DONT run!! Not even for coffee, Prosecco,  a train, nothing. So this is how passionately I feel about this great cause.

I aim to get strong enough to run a half marathon in Brighton. Again this will all be for SWAN UK.

Please support if you can.

We are so grateful- Thank you so, so much.