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‘Jensen needs to be fed 24 hours a day with pumps, but he can still join in with Christmas dinner’

Christmas is a joyous time for many families, but for young children with serious medical conditions, the festivities can be very different.

The Sunflowers Children’s Action Group Christmas party at Forest Pines brought together children who are living with a variety of disabilities and life-limiting conditions. Despite the daily challenges they face, the one thing they all have in common is their shining positivity and the ability to take everything in their stride.

For some of the children, Christmas Day might work a little differently, due to problems with eating or struggles opening presents. However, the resilient families says they adapt as best they can to make Christmas as magical as possible.

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‘We are waiting to hear about his next operation’

Christmas dinner will be very different for Jensen Artley, who needs to be fed 24 hours a day with feeding pumps. Despite his struggles, the smiling six-year-old enjoyed having his face painted with his favourite Pokémon character when he attended the Sunflowers Christmas party with parents Jamie and Chloe.

Jensen, from Grimsby, grows more slowly than other children of his age and his kidneys are particularly small – around the size of a new-born baby’s – and he is currently awaiting the date of his next operation. Eventually, he will need a kidney transplant, but for now he is still too small.



Jensen has his face painted by staff from Once Upon a Party
Jensen has his face painted by staff from Once Upon a Party

“We are waiting to hear about his next operation around Christmas,” Jamie said. “He needs to be fed 24 hours a day with feeding pumps, which is what is in the rucksack he’s wearing. He does still manage to eat, just not enough.

“He can join in with Christmas dinner and have a bit on his plate. We are used to adapting things now.”

Chloe added: “You wouldn’t ever think that there is so many complications with his health. He is a happy cheeky boy that loves playing.

“It is really nice to meet other families who are going through the same and understand at Sunflowers. It is our second Christmas here with them.”

‘We never thought she would be able to walk’

Four-year-old Hattie Strandt, from Grimsby, also attended the party. Sitting in her Frozen-themed wheelchair, she looked like a little princess and could not hide her infectious smile when the Disney characters Elsa and Ariel came over to greet her.

Hattie was diagnosed with spinal muscular atrophy (SMA), a genetic condition, at around 20 months old. Her parents Molly and Rhys noticed that her crawl had changed and Hattie was not able to bear weight on her legs.



Hattie Strandt, 4, from Grimsby, at the Sunflowers Christmas Party
Hattie Strandt, 4, from Grimsby, at the Sunflowers Christmas Party

It is likely that she will be in a wheelchair for life, but her parents have since had some hope. “We never thought she would be able to walk,” Hattie’s mum, Molly, said.

“But now she has injections of what we like to call her ‘magic muscle juice’ and she has started walking with a walking frame. It is incredible, and although she will always have this condition, she has come on a lot further than we initially thought.”

‘It’s the hardest feeling in the world when his surgery mask goes on’

Little Riley Grice, from Scotter, near Scunthorpe, is another brave child who has gone through many challenges in his life. Riley has a brain condition and arthrogryposis, which affects his limbs.

“He’s not got the muscles that others have,” his mum Natasha Beevers said. “He’s had five surgeries and it’s the hardest feeling in the world when his surgery mask goes on and I have to hold him still, but he’s so resilient.



Riley Grice, from Scotter, had a great time at the Christmas party
Riley Grice, from Scotter, had a great time at the Christmas party

“Eventually he will have wrist surgery and foot reconstruction when he grows. He had a major surgery not too long ago, which made him wheelchair-bound, but when I got married in June, he managed to do his first walk down the aisle.

“We love coming to events like this because he can just be himself. There isn’t any worries that he will stick out in the crowd, he can make friends without feeling different.”

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Original artice: https://www.grimsbytelegraph.co.uk/all-about/scunthorpe

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