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Providing comfort to families of terminally ill children

05 February 2018

Newlife- the charity which supports children with disabilities and terminal illnesses and which is the largest charitable provider of essential disability equipment in the UK – has made changes to its Comfort Capsules that provide support for families.

As well as providing equipment for ongoing care, Newlife also offers support when time is short. 

Families caring for a terminally ill child often find it challenging to find quality family time when memories can be created and treasured.

The Comfort Capsule - developed in conjunction with health professionals - is a suite of items carefully compiled to offer support to families when they need it most.

The capsule provides practical equipment, from portable DVD players to ways to position and relieve discomfort. The free loan of a capsule can help support emotional needs of the whole family.

Following recent changes by Newlife, rather than having to go through a professional referral, families can now call  the charity directly, and providing they meet the criteria, they can often receive a capsule within 72 hours.

Newlife has also made a few changes to the content of the capsules. For example, they have now included a voucher for a memory maker, which is a 2D foot or hand print, or a 3D cast.

The charity supplied a Comfort Capsule to Vicky Sansome from Nottingham, for her two-year-old son, Patrick. He has a rare brain condition called Pontine Tegmental Cap Dysplasia which has caused global development delay as well as seizures and hearing loss. Patrick also has only one kidney, which doesn’t work properly and no nerves in his eyes or face.

Vicky said she had found the capsule really useful.

 “The digital camera has been brilliant for us – we are trying to take as many pictures as possible," she said. “ We also have quite a lot of hospital stays with Patrick so the DVD player has been really helpful at distracting him when we are there. He loves the blanket and the pillow - they have gone everywhere with him since we had them.

“He also really loves the teddy bear – Patrick doesn’t really like to be held but he does love contact – the weight of the bear on his tummy feels like he is being touched and helps distract him from discomfort as he is also prone to painful wind. 

"Patrick has a twin and they were able to use the handprint maker together – we are trying to make as many memories of the two of them together as we possibly can.”

Vicky, who is trying to raise more awareness of Patrick’s condition also described how it can be isolating as a parent of a child with a rare illness. “There is very little research about Patrick’s condition,” she said. “It can be quite lonely and scary thinking that you are the only family going through it. We didn’t know that anything like the Comfort Capsules existed but it is an absolutely fantastic service.”

For more information about Newlife and its services, to apply for a Comfort Capsule, or to hear Patrick’s story visit the Newlife website .

                       


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cesar tulio

interesante porque aca en Barranquilla-Colombia no hay experiencia en cuidados paliativos con niños
Saludos
cesar tulio

11/02/2018 15:14:32


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