My name is Matt and that beautiful little dot in the picture is my niece Rubie.

This page has been set up to support my brother Rob, his wife Hollie and their family as they care for their daughter Rubie during an incredibly difficult and uncertain time.

Rubie was diagnosed with intrauterine growth restriction (FGR) during pregnancy and was born prematurely by planned caesarean section, weighing just 2lb 13oz. Since birth, she has faced significant and ongoing medical challenges with numerous hospital admissions and treatments.

Recently, Rubie was admitted to hospital following a sudden neurological event and underwent extensive investigations, including CT, MRI, lumbar puncture and blood tests.

Genetics testing results confirmed Roifman syndrome, an extremely rare genetic condition with only around 20 reported cases worldwide, caused by a mutation of the RNU4ATAC gene. Further neurological assessment identified features consistent with MOPD1 syndrome, an ultra-rare and more severe condition linked to the same gene mutation. Imaging has shown brain underdevelopment, and Rubie’s prognosis remains uncertain while further investigations continue.

Rubie now requires highly specialist and costly medical care, including immunotherapy, ongoing treatment, specialist appointments and medical equipment.

Alongside caring for Rubie, Hollie and Rob are also supporting their children Louie, Lillie and Scarlett through an unimaginably challenging time.

Despite her tiny size and the many challenges she has already faced, Rubie is strong, mighty and continues to fight with incredible strength. At just 10 months old, she has already shown more resilience than most of us will ever need to.

This fundraiser is to help ease the financial burden of Rubie’s care — including treatment costs, hospital stays, specialist equipment and time away from work — so the family can focus fully on being together and supporting Rubie.

I felt I had to do something practical to help, so, I have started running. Those of you that know me will know that I’m not a runner, but have decided to take on a number of challenges to raise funds and awareness in support of Rubie and her family. In September I will be running the English half marathon in Warrington, I have also entered a few other races between now and then that I will share in due course.

Any donation, no matter the amount, will go directly towards Rubie’s medical care and support. If you’re unable to donate, sharing this page would be hugely appreciated.

Rubie’s journey is ongoing, and the page will remain open for anyone who wishes to continue supporting her.

Thank you for supporting ❤️