Families affected by Wolf-Hirschhorn Syndrome

When Tristan was diagnosed with Wolf-Hirschhorn Syndrome (WHS) in mid-2017 I immediately checked to see if there was a UK committee, thanks to many hard-working WHS parents over many years there was one and I joined it immediately, with the goals of learning as much as I could about WHS in order to leave no stone unturned when it came to helping Tristan, and also so I could give back to as many families as possible who are also affected by WHS.

After much effort we started Tristan on growth hormone in 2021, we were not able to get it funded by the NHS (even though in Scotland kids with WHS still receive it free). He has come on in leaps and bounds since then and more than doubled in weight from 11KG aged 4 to now 23KG aged 7. I learnt about growth hormone from speaking to another parent at the 2019 WHS National Meeting, they really are such an invaluable source of information and a great place to meet and catch up with other WHS families.

After a few years on the committee I took on the role of Event Organiser of the 2022 WHS Trust National Meeting (which takes place every 2 years), it went very well and 43 families attended (out of around 250 total in the UK affected by WHS). I'm again organising the WHS National Meeting which will take place on the weekend of May 3rd-5th 2024. 50 families have registered to attend (the most in the Trusts history) as we celebrate the milestone of 30 years of the Wolf-Hirschhorn Syndrome Trust.

Here is a link to the video that myself, Domi and Domis brother Lukasz put together for the 2022 National Meeting. Lukasz did a fantastic job editing. Tristan is in the boat near the start. We are making another for this year:

https://www.youtube.com/watch?app=desktop&v=XJ_bjIzrqks&t

I want to say a huge thank you to everyone who donated so generously when we sent a similar request to this out ahead of the 2022 WHS National Meeting. With those amazing donations Domi and I were able to help lots of WHS families. The WHS Trust pays for registration and some meals over the weekend but cannot fund everything, with the money donated Domi and I were able to pay for specialist items along with meals for lots of families. There are sadly lots of single parent WHS families, usually the mother is left raising a child with WHS on their own, this is incredibly challenging with both parents and almost unfathomable to imagine on your own, for some this weekend away attending the National Meeting will be their only holiday of the year.

Domi and I both want to say a huge thank you to all those who took up our invitation to support WHS through Amazon Smile, the WHS Trust saw a big increase in donations after. Sadly Amazon ended this brilliant initiative in Feb 2023 stating they are going to focus on a handful of big charities instead. This is a huge blow to the thousands of smaller charities and trusts such as ours who received a meaningful amount quarterly when the programme was running.

Domi and I would like to ask each of you to please consider donating to this GoFundMe where every penny/cent donated will go towards helping WHS families, meaning we can bring so much more happiness throughout the weekend and beyond, and ensure lots of families will leave with even bigger smiles on their faces.

With love and thanks

Andy, Domi & family X