News
Newcastle University friends to take on Great North Run for children with rare genetic condition
06 Oct 2023
A Newcastle property manager is running the Great North Run to raise funds for the disabled children of his friend of more than 20 years who he met while they were both studying at Newcastle University.
Manuel Pena, 41, will be running with Juan Igartuburu, 48, who now lives in London with his wife Natasha and two children, and Freddy Forrest, 51, who is also a friend from Newcastle University and now lives in Brighton.
Juan’s children Gisele, 6, and Johan, 4 have both been diagnosed with Ataxia Telangiesctasia (AT), a neurogenerative condition with no treatment or cure currently available.
Juan said: ‘When Gisele was born in 2017, she met all her developmental milestones. There was something strange when she began to walk as a toddler, but thought she would grow out of it.
‘Then Johan was born a couple of years later. After 5 weeks of having him with us, we received some of the worst news a parent could hear.
‘Gisele was diagnosed with a rare genetic condition called Ataxia Telangiectasia (AT), a complex neurodegenerative condition with no treatment or cure available. We were in complete shock. We were told that our daughter would not grow up like most children and would lose her ability to walk, drink and eat independently, speak and read clearly, have a weaker immune system and a higher risk of cancer…. and all by the age of 10 years old. Cognitively they are not affected, and are aware of it all.
‘That same day they suggested testing our son Johan, a little baby at the time, and another month later, very sadly we were told that Johan was also born with Ataxia Telangiectasia.
‘For the last four years, we have been living with AT. Some days we feel low, and others we try to forget what the future holds. But regardless, we always have one thing in mind, which is to try to find ways to help our kids have a better future and to make their lives as normal as possible.
‘Gisele and Johan have ever-increasing treatment needs from private specialist physiotherapy equipment to vitam
Manu said: ‘People with AT have a life expectancy of around 24 years, so obviously we want to make those years the best they can be for Johan and Gisele. We are also all still hoping that treatments will be developed, in which case we will need fund to help pay.
‘I’m not much of a runner and have never run a half marathon before, but anything I can do to help Gisele and Johan will be worth it. We are extremely grateful for any donations.’
Friend of Father of Johan and Jisel
Johan and Gisele’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like them with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘We are delighted to be supporting the family with their fundraising and it’s great to see they have so much support from their friends.’
Juan added: ‘With Tree of Hope’s support, we aim to help maintain our children’s physical abilities as best possible through this very difficult journey and most of all to see our lovely children Gisele and Johan continue to thrive as they have until now.’
To donate to the fund or sponsor Manu, Juan and Freddy, visit https://www.treeofhope.org.uk/gisele-johans-miracle/ or https://www.justgiving.com/fundraising/fundraiser-for-gisele-and-johan
