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Carmarthenshire mum says Guide Dogs support was a ‘lifeline’ after baby son diagnosed with albinism

Chloe Davies, who now lives in Neath Port Talbot, said she was “consumed by worry” after her son Louie was born just after Christmas 2024 with albinism, a rare genetic condition that can cause significant sight loss. Louie, now one year old, attends Guide Dogs Cymru’s My Time To Play sessions in Gowerton, which support young children with visual impairments and offer parents a vital support network.

A difficult start and months of uncertainty

Chloe said she realised something was wrong almost immediately after Louie’s birth, when midwives raised concerns about his unusually white hair and the possibility of albinism. After a stressful delivery and a week in hospital, she returned home feeling overwhelmed.

“I remember feeling completely consumed by worry for his future, and a huge sense of guilt,” she said. “It was like I was failing him, in that I’d somehow given my baby a difficult life before he’d even got started.”

In the months that followed, Chloe spent hours researching the condition, trying to understand how best to support her son. But attending baby groups left her feeling isolated.

“Seeing younger babies engaging more, looking around and reacting to things was incredibly hard. I’d often drive home in tears.”

Louie was later diagnosed with nystagmus, a condition that causes involuntary eye movements. Chloe said she struggled to access support until she finally reached an Eye Care Liaison Officer — and within 24 hours, Guide Dogs Cymru stepped in.

‘An absolute lifeline’

Guide Dogs arranged a home visit, linked the family with a Qualified Teacher of the Visually Impaired, and offered counselling support.

“They were an absolute lifeline to our family,” Chloe said. “It was a huge relief to finally have the right support reaching out to us.”

Louie now attends fortnightly My Time To Play sessions in Gowerton, where children under four with visual impairments develop key skills through sensory play. The sessions also give parents a chance to connect with others facing similar challenges.

“The sessions have been more rewarding than I could ever have imagined,” Chloe said. “They’ve opened up an entire community I didn’t even know existed.”

A milestone moment at the wedding

Chloe married her partner Andrew on 31 January at Pencoed House Estate, with Louie by her side as their “unofficial best man”.

“It will be a very special moment to have Louie with us at our wedding,” she said. “After everything we’ve been through together, it only feels right that he’s up there with us.”

She added that Louie is thriving: standing confidently, exploring the house, and “always with the biggest grin”.

“Louie is happy, curious and thriving, and so am I. That’s something I never thought I’d be able to say during those early months.”

Guide Dogs Cymru is encouraging families of visually impaired children to get in touch to access support through its Children and Young Person services.

More information is available at: guidedogs.org.uk/getting-support

Thando Hopa, model from Johannesburg

People living with albinism still face tremendous stigmatization, persecution and even murder in many African countries, including South Africa, due to traditional beliefs.

https://www.didiermary.fr/thando-hopa-model-albinism/

#Africa #Albinism #Photography #SouthAfrica

Have you ever seen a white Common Raven (Corvus corax)? No, this isn’t a new species… or a ghost. 👻This Raven’s striking pale plumage is the result of the genetic mutations leucism or albinism. Leucism is a reduction in all types of pigmentation, including melanin. Albinism is the inability to produce or distribute melanin.

Photo: cedarleaf, CC BY-NC 4.0, iNaturalist

via amnhnyc

#photography
#birds
#leucism
#albinism
#ravens

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Procedimientos Especiales de la ONU
@UN_SPExperts

Necesitamos urgentemente una acción específica para proteger y promover los derechos de los niños con #albinism que continúan enfrentándose a la discriminación, la violencia y la exclusión sistémicas -
Experto de la ONU @UnAlbinism pide a los Estados @_AfricanUnionque integren la Nota Orientadora para informar sobre los niños con albinismo

@BahaiBIC #Bahai #Mexicali #FelizLunes #news

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