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HELPING NOAH TRAVEL IN SAFETY AND COMFORT

A three-year-old from Barnet with a metabolic disorder which has caused him to weigh more than his nine-year-old brother is now really comfy and safe when he travels to his weekly hospital appointments, thanks to a specialist car seat.

When Noah Patterson was nine months old his parents Asiyah and Ashley realised he wasn’t able to tolerate any food, yet his weight was rapidly increasing – and by the time he reached his first birthday he weighed 15kg. Doctors at a variety of hospitals were unable to give the worried parents answers for their son’s soaring weight gain, until a specialist at Great Ormond Street Hospital diagnosed Early Onset Obesity Syndrome

Noah receives nutrition through fluids as he is still unable to tolerate solid food -and at 31kg, he is now heavier than his seven-year-old sister Nusaybah and wears the same size clothes as his brother Muwahhid. His weight means he can’t walk very far due to the pressure on his knees and he becomes breathless easily. As well as the metabolic disorder, Noah also has developmental delay and severe Autism, which has resulted in him being unable to talk. He finds crowded places difficult, can become agitated and will collapse, banging his head and body on the floor.

Because of Noah’s conditions, when he outgrew his old car seat his family struggled to find something suitable for his size which would also keep him safe, making journeys difficult and limiting where they could go. With the cost of specialist equipment vastly more expensive than standard high street versions, the family turned to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.

After receiving the £600 special car seat from the charity, mum Asiyah said: “The car seat has already made a huge difference to us – it’s heavy, but it really does the job. Normal seats and buggies just aren’t big enough to suit Noah’s needs and it’s too risky to use them. With this car seat I am able to drive us places, making life easier and more accessible as we have three or four hospital appointments each week. It means Noah is more comfortable as he has a seat he actually fits into which means I don’t keep having to check to see if he is ok when we are travelling as I know he is safe and free from danger, which gives me peace of mind.

“When we are out, some people are quick to judge – they see him and think he is overfed. They don’t realise he has a medical condition and that I battle daily to get him to eat. Like most children with Autism it means Noah can be overwhelmed by noise and when he can’t cope, he will scream, throw things and become unmanageable, which means as his mother I’m constantly making sure he is out of harm’s way and safe guarded so he doesn’t injure himself.

“People assume he is having a tantrum and mum can’t cope. I have had a lot of negative comments from people and I would love for them to just take one second to stop and think that there might be more to what they are seeing. No one should pre-judge someone, especially a child by its outward appearance alone. In majority of cases there’s more to a story then the pieces of puzzles you have observed. Rather than criticism, a simple smile and an offer to help will go far.”

“Life isn’t easy but we are adapting. He is a gift to me and I am getting to know him by learning to sign. I just wish he could eat properly and that I could take his pain away.”

Right now, there are another 45 children with disabilities and terminal illness in Greater London with equipment needs totalling £24,101. If you think you could help, go to the website www.newlifecharity.co.uk/greaterlondon and click on the Donate button. Alternatively contact the Newlife County Liaison Team on 01543 431 444. Newlife guarantees that 100 per cent of the money donated to the Greater London fund will help provide specialist equipment for children in the county.

To find out more about Newlife’s work in Greater London, go to:www.newlifecharity.co.uk/local and click on the map. For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk.

Pictured: Noah Patterson

 

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