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Hugo is our 2-year-old, cheeky toddler who a year ago was sadly diagnosed with Hereditary Ataxia with onset in childhood, related to the ITPR1 gene. We have been advised by his Neurologist that they cannot tell us how this will affect him in the future. Unfortunately, there is currently no cure, we have just been encouraged to work with Hugo on his therapies including physio, occupational and speech.

Ataxia is a degenerative disease of the nervous system, many symptoms include difficulty with balance, coordination, speech, vision and swallowing. These symptoms are caused by damage to the cerebellum, the part of the brain that is responsible for coordinating movement. Ataxia treatment involves a combination of medication to treat symptoms and therapy to improve quality of life. Ataxia affects people of all ages, age of symptom-onset can vary widely, from childhood to late-adulthood.

Our original fundraising page has raised more than we could have possibly imagined and has allowed us to seek private therapies who have already made such wonderful progress with helping Hugo to achieve some of his milestones. We feel incredibly fortunate to have the support of the NHS to provide care and access to equipment to help Hugo with his needs, but regular intense sessions are required to help Hugo meet his milestones and progress. We have witnessed in the short time Hugo has been seeing private therapists the difference that they make, however the cost of this is high and require funds that are impossible for us as a family to continue to find regularly. We’re hoping to raise funding for Hugos physio and speech therapy, for him to keep on progressing forward.

We have decided to team with Tree of Hope in order to meet our fundraising targets. Tree of Hope are a registered charity that support families fundraising efforts by managing their funds, promoting their pages and allow access to receive funding from businesses and claim gift aid.

The funds raised go directly to Hugo but are managed by Tree Hope to ensure its used on the things he needs.

We as a family do not know what Hugo’s future will look like, but we are determined to give our little boy every chance possible in life and we couldn’t be anymore thankful for the love and support we receive.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.