A PRESTEIGNE family trying to adapt their home so they can properly care for their little boy say they could need more than £150,000.

The Retallick family are extremely grateful to the local community, who have really rallied round them as they battle to care for little Alfie.

Alfie, who is not yet two, suffers from an extremely rare condition known as ALG13, a type of epilepsy. This causes infantile spasms, leading to significant developmental delay and intellectual disability.

Alfie’s condition is so rare, there are only 38 reported cases worldwide. And because it is so rare there is no prognosis.

After a healthy pregnancy and natural birth, Alfie was born six days overdue in October 2021. He was admitted to hospital with sepsis on day three and doctors discovered he had a hole in his heart.

After a hard start to his life, the ALG13 diagnosis came after 5 months.

Alfie suffers seizures daily, occasionally requiring rescue medication, and hospital visits are often a weekly occurrence, with the toddler under the care of multiple specialists.

He is improving slowly but both he and the family live day-to-day. Mum Laura has started a gofundme page to help pay to adapt their home to care for her youngest son – with estimates putting the potential cost of this at over £150,000.

“We have organised some fundraisers, with family, friends and the community showing great support. We are extremely grateful for all contributions,” said Laura, who has not returned to work because Alfie requires full-time care.

“Day to day Alfie is fully dependent on his parents. We take every day as it comes and enjoy the small things in life.”

The local community has leapt on board. Prest Fest, which took place on September 2, was organised by Phil Greenham and his wife Pam, and included performances by live bands and kids activities, with proceeds from it being donated to the Retallick family.

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Dad Morgan is in the Army and often away, which while hard on him and the family, is necessary as they rely on his wage. The couple also have older sons Freddie, 8, and Tommy, 5.

A ground floor room for Alfie is required, with a wet room and specialist bath. The bath alone would cost approximately £15,000, which is why Laura has started an online fundraiser.

“With coming across many struggles daily due to lack of accessibility in our home we have had to reach out for help financially,” she said.

“I have not been able to return to work as Alfie requires 24/7 care. Morgan is in the Army, his wage is our only income. As a family of 5 we are not in a position to remortgage or save for home adaptations. 

“Alfie requires a ground floor bedroom, a wet room with specialist bath, while access to front and rear of home ramps and decking are also required.

“An occupational therapist has assessed our home and made necessary plans. Having made enquiries to contractors, quotes have come back ranging from £145,000-£180,000.”

Alfie's epilepsy is difficult to manage as he suffers from all types of seizures, and it is also drug resistant. He is on a medical ketogenic diet which has helped reduce seizures over the past few months.

Alfie is fed through a nasal gastric tube but can have three meals of pureed food a day. He is on the list to have a gastrostomy as he pulls his tube out often.

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“Alfie is under many specialists, meaning lots of appointments and travelling, but I am most grateful for these people,” added Laura.

“He has very low tone but has gained strength to hold his head for up to 60 seconds with daily physio.

“He is visually impaired, we use black out sheets and boards with bright toys to try and get him to gain awareness which I feel has come along since his seizures are more controlled.”

To find out more about the fundraiser or to donate, visit https://www.gofundme.com/f/318j9q7a20.