We are taking part in Ty Hafan's 2021 Marathon in May challenge!


After a normal pregnancy and birth Gwen was born and showed signs of severe reflux and discomfort and had trouble gaining weight. At 6 months old Gwen started having multiple seizures and had developmentally regressed. After a lumbar puncture and MRI Gwen was diagnosed with epilepsy, brain damage and Choreoathetosis, which is a movement disorder which is associated with the occurrence of involuntary movements. As time went on, we could see that Gwen had lost all muscle control and was now unable to see.

After extensive tests including genetic testing the doctors found that Gwen didn’t have a working copy of the VpS13-D gene which is a mitochondrial disease, at present there any only 22 people in the world with only one working copy of the gene (Gwen’s dad and myself included) but Gwen has neither working copy which is why her symptoms are so severe and she’s the only one. Mitochondrial disease, or 'mito', is the term given to a group of medical disorders caused by mutations in mitochondria, the tiny organelles that are present in nearly every cell in our bodies and which generate about 90% of the energy we need to live. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious and wide-ranging. There is currently no cure for mitochondrial disease. With this diagnosis we were even more heart broken as it confirms our biggest fear that Gwen will live a shortened life. There was no research base to inform any treatment, no answers, no comparisons, and that’s still the case now. We can stabilise Gwen symptoms with medication and make her as comfortable as possible, but every single medication has a side effect, so it’s a case of suck it and see. We just take Gwen for who she is, and if the meds work, they work. Gwen needs around the clock 24 hour care and all her needs met, due to the risk of catastrophic epileptic seizures. In addition to this, Gwen is unable to do anything for herself and has no control over her body, which means even putting a hand to her mouth isn’t possible.

However, we are determined to make everyday count. It was through this diagnosis that we were referred to Tŷ Hafan Children’s hospice, wow what a wonderful place it is too.

Tŷ Hafan is one of the UK’s leading paediatric palliative care charities and offers care to children and support for their families, throughout South Wales. There are only two Children's hospice's covering the whole of Wales.

If you think this means they simply provide a place where children can come to die, you couldn’t be further from the truth.

They offer comfort, care and support to life-limited children, young people and their families in the hospice, in the community and in their home so they can make the most of the time they have left together.

They allow parents and carers to relax and recharge their batteries. And make sure the needs of brothers and sisters are never forgotten.

During the Covid 19 pandemic Tŷ Hafan has seen a huge drop in income and needs “urgent support” to see it through the most challenging time in its 21-year history.

With only 6% of its annual funding coming from the government, Tŷ Hafan relies on the generosity of the public to carry out its service, at a cost of around £4.5m each year.

Through 2020 and 2021, however, a number of fundraising events that were planned have had to be cancelled due to the restrictions put in place since the coronavirus outbreak began to affect the UK. Also, with the restriction on retail fundraising through the charity shops have been forced to close too which is a further lack of revenue

So, we have decided to do something to help and to say thank you for their wonderful support they give us and other families. We are taking part in the fantastic challenge to go the distance for Tŷ Hafan – by doing Marathon in May which we will each complete our marathon by either doing 26.2 miles or 55,374 steps during the month of May! Yes this doesn’t sound a lot so we’ll be trying our best to see how many marathons we complete by the end of it and we’ll keep you updated. Gwenny will be doing hers on wheels in her chair,  Gwen’s 8 year old big sister Catherine will be joining us too along with Aunty Chele, Aunty Steph, Uncle Chris, big cousins Grace and Caitlin, and of course our dog Poppy.