Thank you for reading my page and for your support. My name is Manuel Pena. I have not done much running until now as I prepare to run the Great North Run, my first half marathon at the age of 41. But when a challenge like this can give hope for a better life for 6 yr old Gisele and 4 yr old Johan, you know it is the right thing to do. Their father (Juan) and mother (Natasha) will also be running the Great North Run and this is their fundraising page is https://www.treeofhope.org.uk/gisele-johans-miracle/

I met Juan 21 years ago and since then we have become close like brothers. After marrying Natasha who is the kindest person, they had Gisele, who is a very smart and very cheeky girl. By the age of two, she had achieved all her developmental milestones by the doctors but when she started walking from time to time, she would lose a little bit of balance. After Johan was born, Natasha and Juan found out the terrible news that Gisele was diagnosed with Ataxia Telangiectasia (AT). The news became worse when Johan was also diagnosed with AT. Johan is also a very nice kid, sharing his toys and loves anything that has wheels.

Ataxia Telangiectasia (AT) is a rare neurodegenerative condition with no treatment or cure available. Living with AT means Gisele and Johan could reach their peak of development at the age of 8. From the age of 8 Gisele and Johan’s health could start to deteriorate until they are unable to walk, speak clearly, drink and eat independently. The life expectancy for someone with AT is on average in their twenties. This is due to the increased susceptibility to significant pulmonary problems, higher cancer risk and neurological decline including significant problems with swallowing.

The funds are being raised to improve Gisele and Johan's quality of life and to try make their lives as normal as possible despite the AT diagnosis and current short life expectancy. For this Gisele and Johan require several visits to numerous specialist doctors, private specialist physiotherapy equipment, osteopaths, massages, and vitamin supplements to name a few. There are currently some treatments being trialled but nothing has been approved to stop or reverse the diagnosis. Some of the funds would be reserved to cover the costs if any of these treatments are approved or failing that, to modify Gisele and Johan’s home for their reduced mobility which may include requiring a wheelchair.

Many thanks for your help and if you would like to help us raise some funds please get in touch.