Watching your baby grow is a remarkable experience – but when the future is uncertain and you are taking each day as it comes, the experience becomes all the more precious.
One-year-old Patrick Langford from Nottingham has a rare brain condition called Pontine Tegmental Cap Dysplasia – he has global developmental delay as well as seizures and hearing loss. He only has one kidney which doesn’t work properly and no nerves in his eyes or face which means he will often bite his lips, sometimes drawing blood, without realising what he is doing.
Patrick’s condition is so rare that it is uncertain as to what the future holds for him but his condition is thought to be life limiting. Patrick’s mum Vicky was told about Newlife Foundation for Disabled Children, the UK’s largest charitable provider of essential equipment to meet the specialist needs of children with disabilities and terminal illness, by their support worker from the Butterfly Project at Barnardo’s.
Newlife was able to give Patrick a Comfort Capsule which had been put together with the help of an expert team. The carefully chosen items in the capsule aim to help families make the most of their precious time with their child, creating special memories they can treasure forever.
Each Comfort Capsule contains items which can help support the whole family – such as a soft blanket, a supportive V-pillow, hand print maker, camera and digital photo frame as well as a portable DVD players – giving families the opportunity to make and preserve memories for year to come.
Patrick’s mum, Vicky, said; “The digital camera has been brilliant for us – we are trying to take as many pictures as possible. We also have quite a lot of hospital stays with Patricks 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.”
To access the Comfort Capsule service a request must be made to Newlife Nurses by a healthcare professional on behalf of the family. Newlife can be contacted free from a UK landline of mobile on 0800 902 0095 or on 01543 468 400. Alternatively you can email firstname.lastname@example.org. For more information about Newlife and the range of services on offer, visit www.newlifecharity.co.uk.
Pictured: Patrick Langford