Christmas has always been important to Hannah and her family, but more so now than ever. 

Huntington's really does impact all aspects of how we celebrate Christmas, but it most definitely doesn’t stop us enjoying ourselves and making lasting memories. Stu may have Huntington's but we never let Huntington's have us, we will always make sure we battle through the struggles so everyone enjoys the Christmas season. 

Back in December 2016, Stu had his blood test, to finally find out what all this clumsiness and weight loss was. Throughout December 2016 Hannah did everything possible to make it a special and memorable Christmas. This included meeting friends, days out and family get-togethers. The reality was, she was trying to hide the fact that come the new year they'd have that result - which deep down they knew would be “positive”. 

Hannah tries to adopt the same attitude towards Christmas, making the most of their precious time together, whether that be just together at home watching Christmas films or spending time out with family.

On a daily level, Stu's symptoms prevent him from being able to do a lot of the things he would like. At Christmas each year, they see how much harder things are for him. Things like ice skating which they'd had previously done together now involves Stu sitting on the side watching.

When at home playing board games, Stu now can’t always take part, due to the fine motor skills required but we now create teams so we can include him to actively take part. We have always enjoyed meals out, especially at Christmas. We do often find we now return to the same pubs or restaurants so they are familiar to Stu and the staff understand his needs. In all the we do, just being mindful of how we support Stu but making it special is our top priority. 

Hannah knows that the food and environment impact how Stu enjoys his meal so making sure he’s happy is key. She carefully thinks out Christmas dinner so that Stu can enjoy it without choking by being creative to make soft but still delicious food - although this can be a challenge. They always try to make sure he still eats all his favourite Christmas foods.

Adapting to the changes

When you live with Huntington's in your life, you almost don’t see the changes as you just adapt and change as it happens. But Christmas time makes it all too obvious. 

Throughout the course of this year, Hannah said that many of their plans would involve them heading home so Stu has his low bed to sleep in and remain unharmed. She said they are still able to enjoy the season and make it special by seeing their loved ones, but it does now get cut short by the fact Stu needs to stay safe and well. 

Most of their family Christmas plans have to be adjusted so that everyone can enjoy themselves safely. They would often visit family and stay for the night, but Stu’s symptoms have progressed, this isn’t so easy for them. They do have small traditions in place that they do together as a family.

Decorating the Christmas tree is a key task we do together whilst watching Christmas films and eating an entire box of chocolates. Key moments like this really do mean so much to us. 

They also go and visit Santa with their children Harry and Bella. Stu loves seeing huge smiles on the children’s faces and loves to be a part of their fun. Hannah and Bella also bake Christmas treats as Stu loves chocolate. They focus on what he fancies and get creative so that it is safe for him to eat.

All these traditions are what make it special to us, when you live with Huntington's you never really know what the following year will bring, so we treasure every moment that we can. If we do have to go somewhere without him, we always make sure we bring home a special treat so we can enjoy it together at home.

Since Stu’s diagnosis, they have connected with other families in the local area, so they now have a tradition of going for a Christmas lunch with others whose lives are affected by Huntington's disease.

We don't buy many Christmas cards now but instead opt to make a donation to the Huntington's Disease Association, because without them our story would be very different. 

Every year they try and buy the tree a new decoration, so they can remind themselves of the memories shared when they brought it together.

Enjoy every moment, and let yourself have the things you need as time with family and friends or a pause where you do something for yourself. Remind yourself of the fact Christmas is special to all of us in our way and however that looks for you, that’s ok. It doesn’t have to be perfect, just being together is the most important gift of all. 

Thank you Hannah for sharing your story of how Christmas has changed for you and your family and how you have adapted to it.