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Rare & Undiagnosed Diseases

• Due to release summer 2027

This photograph captures a moment I will never forget. 

Holly was just a little girl, undergoing chemotherapy for a brain tumour caused by Neurofibromatosis type 1, a rare condition she was born with. We were sitting in a hospital room when we were told that her portocath had failed, meaning she would need surgery to have it removed and that the rest of her chemotherapy would have to be given intravenously each week.

 In that moment there was fear, sadness and uncertainty about what lay ahead, and all I could do was hold my baby girl close. Holly endured chemotherapy from the age of 3 to 5, and again from 10 to 11, but some of the hardest things she faced were not found in a hospital.

They was the name-calling, bullying and assumptions made by other children about how she looked or what she could or could not do because of her disability. This is why the work of Really Real Resources is so important to us. By showing children and young people the real lives, experiences and challenges of disabled people, these resources can replace assumptions with understanding, and difference with acceptance.

If resources like these had been available when Holly was growing up, perhaps she would have felt less alone and faced fewer hurtful experiences. Real photographs create real conversations, and real conversations can change the way children see the world. Really Real Resources is helping the next generation understand that disability is not a definition of a person, nor a measure of what they can achieve. It is about seeing the person first, challenging preconceived ideas and making sure that every child has the opportunity to belong.

Many Thanks
Vicky Donald 

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