Hugo is our cheeky little 4-year-old who was sadly diagnosed with Hereditary Ataxia with childhood onset, related to the ITPR1 gene at 17 months old. His neurologist has advised us that they cannot predict how this condition will affect him in the future, but we have had confirmation through further testing to say that his condition is degenerative. Unfortunately, there is no cure, but we have been encouraged to focus on therapies for Hugo, including physiotherapy, occupational therapy, and speech therapy.

Ataxia is a degenerative disease of the nervous system. Its symptoms include difficulty with balance, coordination, speech, vision, and swallowing. These symptoms are caused by damage to the cerebellum, the part of the brain responsible for coordinating movement. Treatment for ataxia involves a combination of medication to manage symptoms and therapy to improve quality of life. Ataxia can affect people of all ages, and the age at which symptoms first appear can vary widely, from childhood to late adulthood.

Our original fundraising page raised more than we could have ever imagined, allowing us to access private therapies that have already helped Hugo make significant progress toward achieving some of his milestones. We feel incredibly fortunate to have the support of the NHS in providing care and access to equipment for Hugo's needs. However, regular, intensive therapy sessions are essential for Hugo to continue meeting his milestones and progressing.

In the time that Hugo has been working with private therapists, we have witnessed the incredible difference they have made. Unfortunately, the cost of these therapies is high, and it’s impossible for us as a family to fund them on a regular basis. We are continuing to find new ways of fundraising to enable us to access such therapies so Hugo can look to develop skills in order to gain a level of independence.

To help us meet our fundraising goals, we have decided to partner with Tree of Hope, a registered charity that supports families by managing their fundraising efforts. Tree of Hope promotes fundraising pages, manages funds, and enables access to additional funding through businesses and gift aid.

The funds raised will go directly to Hugo’s needs but will be managed by Tree of Hope to ensure they are used appropriately for his care.

As a family, we do not know what Hugo’s future will look like, but we are determined to give our little boy every chance possible in life. We cannot thank you enough for the love and support we have received—it means the world to us.

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.