Father-of-two Ian Rundall, from Harlow, aims to complete 100km this month after being inspired by 11-month-old Rudy Hastings – the son of his friends Harry and Nicola.

Rudy was born with an extremely rare genetic condition called Multiple Congenital Anomalies Hypertonia & Seizures or MCAHS1. A condition so rare, that it was only detected in 2014 and there are only around 50 known cases worldwide.

My words couldn’t do justice to the effort that Rudy’s parents have put into raising awareness of their son’s condition and I urge you to visit their Instagram page to follow the family’s journey.
You can follow Rudy's journey on Instagram: @rudysw0rld

It was Rudy’s vision that initially concerned his parents. From around 4 weeks old he made little eye contact with them or his toys and his eyes would repeatedly drift upwards or shake from side to side. At around 11 weeks old Rudy then began to have seizures. He suffers from Hypotonia (low muscle tone) which means he struggles to hold his head up, sit or roll. And he has global developmental delay.

Mum Nicola said: “Despite feeling completely heartbroken and railroaded by his diagnosis, we were also acutely aware of just how smiley and happy Rudy was and still is. Our goal is to enrich Rudy’s path and enable him to achieve his maximum potential. Ironically, we had a fundraising relationship with Haven House prior to Rudy being born.

Rudy is now able to benefit from the hospice’s therapeutic services. It’s hard to know what life is going to be like for Rudy. This can be hard not knowing, but on the other hand having no expectations or benchmarks to compare him to, the sky really is the limit with what he might be able to achieve.”

Haven House is able to offer Rudy a number of holistic services. Our hospice physiotherapist Donna supports Rudy to develop and better support himself giving him every possible chance in maximising his abilities. Our respite care will also support mum and dad when they need a break.

Ian, a black cab driver, said: 

I just feel the effort and commitment Harry and Nicola put in to raise awareness of Rudy’s condition on top of caring for their son deserves recognition. This is why I thought to pair my running with a challenge to raise money for Haven House where the family are able to receive care and support.

Ian’s epic challenge has captured the attention of his under 15’s team at Harlow Rugby Club with the boys backing their coach and each committing to go the 100km also.

Ian and the boys have been clocking up the miles despite the rain, wind, snow and ice – with Ian having already completed 35km out of the 100km. Collectively they have raised over an amazing £3,000 – a total that is rising.

Ian continued: “The foundation of what I coach is based around team spirit, respect and ensuring you give your best in anything that you do. So when the boys advised me, they wanted to run their own challenge alongside mine to support me I was lost for words. Their eagerness to attempt this challenge in support of their team showed a maturity beyond their years. They are a fantastic group of young men and a credit to their parents.”

To support Ian visit Ian-rundall-hh-rh and follow Rudy’s World on Instagram @rudysw0rld

To find out more about how we support seriously ill children and their families, watch our film or meet our families