A surprise dinner with Cinderella was the highlight of a special trip to Disneyland Paris for life-limited teenager Holly Smallman, creating memories her Merseyside family will treasure forever.
Like many girls, 13-year-old Holly loves Disney films, especially the new version of Cinderella – so after a particularly tough year which has seen her admitted to the high dependency unit at their local hospital on numerous occasions, parents Hayley and Gary arranged for Holly and seven-year-old sister Ruby to go to the magical resort as a treat.
The family helped to keep Holly comfortable during the trip and record their adventures thanks to some of the contents of a Comfort Capsule sent to them by Newlife Foundation for Disabled Children – which helps UK children with disabilities and terminal illness and supports their families.
Holly has an undiagnosed metabolic condition which is causing her health to deteriorate. She also has quadriplegic cerebral palsy and epilepsy, has a tracheostomy in place to help her breathe and is oxygen dependent. She can’t speak and makes her needs known through facial expressions and a silent cry if she is uncomfortable or in pain.
Holly’s mum Hayley said: “Holly is dependent on us for all her care and uses a wheelchair – bright pink – to get around. Our community matron had heard about the Comfort Capsules from Newlife and thought one would be perfect for us, so she made the application.”
Each Comfort Capsule contains items which can support the whole family, such as V-pillows and super soft, comfy blankets which can be used to keep parent and child snug and supported for cuddles, while a memory box, camera and digital photograph frame can capture and preserve precious moments.
The supply, delivery and collection is completely free and while some items will remain with the family when the capsule is no longer needed, other items can be returned so it can be assessed, serviced, clinically cleaned and refurbished, ready to send to another family.
Hayley said: “We received the Comfort Capsule a few days before we went to Disneyland and it made a big difference. Holly used the blanket while we travelled and then in the hotel room the V-pillow supported her properly so she could sit up. It’s difficult to take specialist equipment with you when you go away, so this really helped. Ruby took charge of the camera and took lots of photographs of the two of them together and of all the things which happened while we were there.”
One photo included Prince Charming coming out of the parade to give the girls a kiss – and of course plenty were taken when the girls looking particularly stunning when they had dinner with the Disney Princess.
“Holly’s whole world is pink and sparkly and she just loves a pamper session – getting her nails done, massages and reflexology, I knew she would love the trip to Disneyland and we wanted to do something extra special.
“Because I had booked the dinner, I thought I would have princess dresses made for Holly and Ruby too. I asked family and friends to make butterflies which were then sewn onto the dresses – so they were made with love. Both girls had their hair and makeup done at the salon before they put on their butterfly dresses. Both will have that memory of that day.
“Holly has been so ill and we have had lots of bad news as doctors have prepared us for the future; so to make every moment count is important to us.”
Now back home, the family are excited to be showing off their photographs on the digital photo frame which was included in the Comfort Capsule and using some of the other items, such as a handprint kit.
Hayley added: “The concept of the Comfort Capsule is amazing. This time is precious and you need to pack so much into a short time; to have these things to help create and keep memories is wonderful.”
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 or mobile on 0800 902 0095 or on 01543 468 400. Alternatively you can email nurse@newlifecharity.co.uk. For more information about Newlife and the range of services they offer, visit www.newlifecharity.co.uk.
Click here to read more about the Comfort Capsules service provided by Newlife.
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