Dear friends,

This is a heartfelt call/appeal. 

The two smiley little angels in the photos with Annie are Gisele and Johan Igartuburu. 

They are my good friends Juan & Natasha Igartuburu's only children. Both of them have been nearly simultaneously diagnosed with Ataxia Telangiectasia (A-T) when they were 2 years-old and 5 weeks-old, respectively.

Ataxia Telangiectasia (A-T) is a rare, genetic, progressive disorder that affects multiple body systems, primarily the nervous and immune systems. This debilitating condition typically manifests in childhood, leading to a wide range of symptoms including progressive loss of muscle control (ataxia), weakened immune system, increased susceptibility to infections, and the formation of small, spider-like blood vessels (telangiectasias) on the skin and eyes.

Living with AT means Gisele and Johan could reach their peak of development at the age of 8 when their health could begin to deteriorate rapidly and irreversibly. The life expectancy for someone with AT is heartbreakingly around 2 decades.

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. In order to raise funds and awareness a group of friends including myself will be running the Newcastle half marathon in September. 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. You can be assured that your donation will directly go to making these beautiful children's life better, you will be helping them have the best possible life.

Please visit their page - Gisele & Johan’s Miracle - Tree of Hope - to learn more about these beautiful, lovely little angels, and please consider helping this amazing family navigate such a challenging journey.

Gisele & Johan’s Miracle - Tree of Hope

Thank you so much!

Freddy.