Marking Rare Disease Day And Seeing All The Great And Good In Our Remarkable Children On This Day.

By Ruth Kettle-Frisby – Guest Writer and Community Activist

Ruth is passionate about fostering positive change within the local community and regularly contributes insights and stories to The Havering Daily.

February 28 is Rare Disease Day. There are 300 million people around the world who have a diagnosis of a rare disease; over 7,000 diseases; and around 95% of them lack an effective treatment.

 I love someone with all my heart who is utterly brilliant, and has to put up with more than many non-disabled people will ever imagine – socially, as well as medically. My gorgeous girl is seven years old, and lives with a neurodevelopmental rare condition called CDKL5, which causes intractable epilepsy and impacts every area of her development.

She is in a really wonderful place, and this has taken a tremendous amount of work alongside a range of professionals locally here in Havering: at her school; and before that from the magnificent CAD 0-5 team…and also further afield: Haven House Hospice; SNAP Charity; Great Ormond Street Hospital; Bristol Children’s Hospital; and even Boston Children’s Hospital.

She is very loved at home, at her school and in our community and did I mention I love her to bits? You would too. She is the most beautiful, cheeky, headstrong little girl and we’re so lucky to have her. 

However, we are forced to navigate our lives within oppressive systems that normalise harmful rhetoric that frames our children as burdens, and we have to field manifest absences of empathy and understanding daily. With notable exceptions, the most well-meaning health professionals remain completely unaware of the realities of daily life for children with rare diseases. Exhausting fights frequently mount up just to fulfil our children’s most basic needs and rights.

Too many lack awareness and understanding of what children with rare conditions require in terms of their most basic needs and rights to dignity when accessing nappies, for example. We don’t expect professionals to know it all, but we do look forward to a time when parent-carer experts in our children are listened to, valued and validated.

 Although individually rare, rare diseases are collectively common. So, on Rare Disease Day in Havering, remember that families living with rare diseases are assets to our communities, and always speak to us respectfully because none of this is easy for us. 

Join me in standing strong in your support for the rare disease community while we work together to push for a wider focus on rare conditions: advocating for better health and social care; increased research funding; and effective policies to improve the lives of everyone affected by a rare disease around the world.

 The truth is, aside from currently inescapable ignorant attitudes, we also experience a lot of love and joy from our wonderful neighbours, friends and wider communities here in Havering.

 Please join me in marking Rare Disease Day 2025, and seeing all the great and the good in our remarkable children on this day and beyond.

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