The mum of a six-year-old boy, who has a rare condition, has spoken of her pride at his school’s decision to celebrate a day devoted to children who face extraordinary challenges.

Reggie Alpaslan has a condition called Albright’’s hereditary osteotrophy, a disorder that causes developmental delays and impacts the skin and hormones.

19 photos as colleagues from Burnley based Healycare Ltd host bake sale for Posi...

And Reggie was the star of the show at a Rare Disease Day held at his school, Wheatley Lane Primary in Fence.

Reggie Alpaslan with two classmates at the Rare Disease Day at his school, Wheatley Lane Primary in Fence. Reggie has a condition known as Albright's hereditary osteotrophy

The day included an assembly where everyone heard about Reggie’s story and pupils spent time in class completing activities to show how everyone is wonderfully different.

Pupils also dressed in bright colours which raised £157 for Rare Disease UK, a pioneering national campaign by Genetic Alliance UK that represents and unites everyone in the rare disease community.

Rare Disease Day is an annual global observance held to raise awareness and improve treatment access for people living with rare conditions. Launched in 2008 the day brings together millions of people worldwide to spotlight the realities faced by those living with rare conditions and to call for more equitable healthcare, research and social inclusion.

There are more than 6,000 identified rare diseases, together impacting an estimated 300 million people worldwide. Seventy-two per cent of rare diseases are genetic, and around 70% present in childhood. Many people living with rare diseases frequently experience years of delayed diagnosis, limited or no treatment options, fragmented care, and significant social and economic barriers.

Reggie (second from left) with classmates who all dressed in bright colours to mark Rare Disease Day

Reggie’s little sister Ela who is two, and their older brother, Tommy Hartley (13) also have the same condition. Their mum, Michaela Alpaslan, said: “Rare Disease Day is deeply personal to our family. Watching my three children face challenges with such courage and resilience every single day inspires me more than words can say.

" When people have never heard of rare conditions, like pseudo hypothyroidism type 1a (Albright’s hereditary osteotrophy) it can often feel like you are constantly fighting a silent battle — trying to explain, advocate, and help others understand the realities families live with every day.

“That’s why I’m so proud to see Reggie’s school celebrating awareness, inclusion, and acceptance. Moments like this help children and families feel seen, heard, valued, and supported, I cannot thank the school enough for doing this and also raising funds for an amazing charity.”