Axarquia
Baby from Frigiliana battles ultra-rare neurodegenerative disease as family launches urgent funding appeal
Frigiliana parents Ylenia and David faced unimaginable fear on December 12, 2025, when their four-month-old son Nahel suddenly suffered convulsions at home in the early hours. Emergency hospital transfers, extensive tests and anxious waiting led to a devastating diagnosis: IRF2BPL-related disorder, also known as NEDAMSS syndrome.
Condition affecting fewer than 40 people worldwide
Nahel entered the world on August 25, 2025, at Hospital Comarcal de la Axarquia without complications and developed normally at first. Doctors later identified the extremely rare genetic neurodegenerative condition, which disrupts neurological development and risks causing regression in acquired skills such as speech or movement, alongside epilepsy and motor disorders. Only about 40 cases exist globally, with roughly 15 in Spain and two in Andalusia. At seven months old, Nahel functions at the level of a two- or three-month-old infant, though he has begun smiling again and shows small daily gains through early intervention.
Seizures and a journey to Madrid for answers
Initial seizures brought a 10-day hospital stay in Malaga with medication that gradually stabilised him. Further episodes in mid-January prompted a trip to Madrid for a second opinion, where specialists helped control the crises. Confirmation of the IRF2BPL diagnosis brought a wave of uncertainty, yet the family has stayed strong. Nahel continues attending early intervention sessions at El Taller de la Amistad in Nerja for physiotherapy and stimulation while receiving epilepsy treatment.
Experimental gene therapy offers sole hope to halt progression
No approved cure currently exists for this disorder. Experts consider an experimental gene therapy developed in the United States the only intervention capable of slowing or stopping neurological decline. Families across Spain, including another child in Granada, have joined forces to access the treatment, which carries a prohibitive total cost of around €1.5 million. Nahel’s parents need approximately €350,000 more to reach their share.
The unity campaign hopes to make Nahel’s future safe.
Ylenia and David established the association ‘Por la sonrisa de Nahel’ to channel donations and organise support events. Significant funds have already arrived through community generosity, but the target remains pressing. “We refuse to live with the regret of never having tried,” David explains. The couple stress that Nahel’s story centres on love, small victories and unwavering determination rather than the diagnosis alone.
How to support Nahel’s smile
Generous individuals can contribute via bank transfer to ES11 2100 5613 8702 0016 4123, referencing ‘Por la sonrisa de Nahel’. Further details and updates appear on the association’s social media channels. Every donation helps bring the pioneering therapy closer and sustains hope for Nahel and other children facing this rare condition.
Rare diseases like IRF2BPL touch thousands of families who rely heavily on scientific research and collective kindness. Ylenia and David remain committed to fighting for their son’s brightest possible tomorrow. “Nahel’s future remains unwritten, and we will do everything in our power for him.”
Himalaya Moms continues to draw steady crowds in Torrox Costa through its unbeatable combination of genuine home-cooked Himalayan recipes, attentive hospitality, and a perfect promenade setting that delivers memorable meals every visit. Guests regularly name this spot the number one choice for Indian and Nepali cuisine along the Costa del Sol, thanks to consistently high praise for freshness, flavour balance, and overall satisfaction that earns it top rankings locally.
Seafront positioning creates an inviting space filled with natural light and gentle breezes. Patrons relax on the spacious terrace overlooking the Mediterranean while cosy, funky interiors offer neat table settings and comfortable seating suited for couples or larger groups.
General feeling about the food
Every plate is as fresh and expertly prepared with spices that they deliver authentic depth without overwhelming heat. Visitors often declare these meals among the finest Indian or Nepali experiences they have encountered anywhere, praising tender, flavoursome ingredients and perfectly cooked accompaniments.
For starters…
Poppadoms arrive together with generous dips and pickle trays that set a strong opening note. Additional options bring tasty bites such as marinated pieces ready to sizzle and delight right from the kitchen.
Mains featured
Selections feature tender chicken korma infused with rosemary alongside Bombay potatoes and classic tikka masala. Sizzling chicken saslik plates impress with their aromatic profile while fresh curries and tandoori chicken keep dishes balanced and satisfying.
Desserts are presented, and something to quench thirsts
Sweet endings arrive with refreshing mango ice cream that cools the palate perfectly. Traditional rice pudding offers a comforting close prepared in true homestyle.
Refreshing lassis provide cooling contrasts to spicy mains, while masala chai and similar traditional options add familiar comfort. Reasonably priced wines, beers, and occasional speciality pours complete the list for every preference.
What’s it cost?
Costs remain accessible with a daily menu priced at around €12 that offers solid choice and portion sizes. Full à la carte meals average around a comfortable €35 per person, delivering clear value for quality this high.
Takeaway and delivery services
Convenient takeaway packs allow guests to enjoy favourites at home, while home delivery options extend the experience further across Torrox Costa.
Hungry diners can locate the restaurant easily at Paseo Marítimo de Ferrara on the corner with Avenida Mediterráneo, specifically Calle Estepona 25, Torrox Costa, directly on the beach promenade. During busy times of year, this place fills out, so call 631 733 504 to reserve. himalayamomsnepaliindianrestaurant.com
Authentic homemade Himalayan & Indian cuisine. Himalayan Moms FB
Himalaya Moms continues to draw steady crowds in Torrox Costa through its unbeatable combination of genuine home-cooked Himalayan recipes, attentive hospitality, and a perfect promenade setting that delivers memorable meals every visit. Guests regularly name this spot the number one choice for Indian and Nepali cuisine along the Costa del Sol, thanks to consistently high praise for freshness, flavour balance, and overall satisfaction that earns it top rankings locally.
Seafront positioning creates an inviting space filled with natural light and gentle breezes. Patrons relax on the spacious terrace overlooking the Mediterranean while cosy, funky interiors offer neat table settings and comfortable seating suited for couples or larger groups.
General feeling about the food
Every plate is as fresh and expertly prepared with spices that they deliver authentic depth without overwhelming heat. Visitors often declare these meals among the finest Indian or Nepali experiences they have encountered anywhere, praising tender, flavoursome ingredients and perfectly cooked accompaniments.
For starters…
Poppadoms arrive together with generous dips and pickle trays that set a strong opening note. Additional options bring tasty bites such as marinated pieces ready to sizzle and delight right from the kitchen.
Mains featured
Selections feature tender chicken korma infused with rosemary alongside Bombay potatoes and classic tikka masala. Sizzling chicken saslik plates impress with their aromatic profile while fresh curries and tandoori chicken keep dishes balanced and satisfying.
Desserts are presented, and something to quench thirsts
Sweet endings arrive with refreshing mango ice cream that cools the palate perfectly. Traditional rice pudding offers a comforting close prepared in true homestyle.
Refreshing lassis provide cooling contrasts to spicy mains, while masala chai and similar traditional options add familiar comfort. Reasonably priced wines, beers, and occasional speciality pours complete the list for every preference.
What’s it cost?
Costs remain accessible with a daily menu priced at around €12 that offers solid choice and portion sizes. Full à la carte meals average around a comfortable €35 per person, delivering clear value for quality this high.
Takeaway and delivery services
Convenient takeaway packs allow guests to enjoy favourites at home, while home delivery options extend the experience further across Torrox Costa.
Hungry diners can locate the restaurant easily at Paseo Marítimo de Ferrara on the corner with Avenida Mediterráneo, specifically Calle Estepona 25, Torrox Costa, directly on the beach promenade. During busy times of year, this place fills out, so call 631 733 504 to reserve. himalayamomsnepaliindianrestaurant.com
Fans of the King of Pop can experience his legendary moves and music live in a fresh stage production this week. David Soto brings his acclaimed show to the Costa Tropical for one unforgettable evening of rhythm and performance.
David Soto channels the icon on stage
Spanish dancer, choreographer and director David Soto fully relives Michael Jackson throughout the performance. His interpretation combines precise footwork with original artistic touches drawn from multiple disciplines. Audiences can witness creative additions that refresh classic routines without copying previous tributes. Soto draws on his expertise in locking and popping to deliver energetic sequences that capture the real spirit of Jackson’s most famous dances.
Innovative elements refresh a classic legacy
Performers will be integrating dance, live music and visual effects into a dynamic hour-and-a-half journey. Fresh artistic proposals appear together with all Jackson’s most familiar hits, creating moments of surprise and pure delight. Viewers enjoy a mix of high-energy choreography and sparkling costumes in a theatrical extravaganza that honours the global superstar. Many describe the production as a magical celebration rather than a simple imitation, allowing new generations to discover Jackson’s genius through movement.
Expect non-stop entertainment and pure nostalgia
Soto leads the cast in recreating iconic moments while adding his personal vision. Music from Jackson’s vast catalogue fills the auditorium as dancers execute sharp, synchronised routines. Bright lights and engaging staging maintain momentum from start to finish. Families, long-time admirers and younger enthusiasts will find plenty to enjoy in this lively homage. Past performances have received enthusiastic applause for their passion and creativity.
Event details
- Friday 24 April 2026 at 7pm.
- Venue: Auditorio Casa de la Cultura, Calle Puerta de Granada 19, Almuñecar.
- Tickets cost €15 general admission and can be purchased online via lacocheraentradas.com or in person at Casa de la Cultura, Viajes Azul Marino and Libreria Contreras. For more information, contact (+34) 628 492 693 via WhatsApp.
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