Maisy Kidd-Munnery from Harwich in Essex is certainly a fighter. Born nine weeks prematurely, she suffered two brain haemorrhages which left her blind, unable to speak and diagnosed with Cerebral Palsy and a severe form of Epilepsy. At one point she was having up to 200 seizures a day. Now, aged 11, she has a daily battle with pain and isn’t able to leave her home for long, but there is a special custom moulded mobile seat which would help.
As well as having a dislocated hip, which has deteriorated over the past year, and a deformed thigh bone, Maisy has a curvature of her spine and needs to wear a spinal brace to hopefully delay any further deterioration for as long as possible. However, she isn’t able to tolerate this for long, so she also uses a special lycra suit to ensure she has postural support 24 hours a day. It’s also important she has a regular change of position to reduce painful pressure sores which can cause her skin to break down.
As Maisy finds her wheelchair too uncomfortable to use for more than a few hours, a custom moulded seat would help to reduce her pain, as well as give her and her family the freedom to leave their home for longer periods. However, as the seat costs £4,637 and her parents Sophie and Matt, turned to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Now the charity is calling for local heroes to come forward to help fund the equipment which would make such a difference to her life.
Sophie said: “When Maisy was born she spent six weeks in the hospital special care unit and we weren’t given much hope, so we couldn’t believe it when we finally got to take her home. Eleven years later she is an amazing little girl and quite a few people are surprised at some of the things she can do – like eating. She is still able to eat pureed food safely and her favourite meal is chicken casserole with dumplings and chocolate sponge and custard!
“Because she is blind, she developed acute hearing and is now able to recognise some of the world around her through sound and we use music to help distinguish between different activities and different times of the day. She is sometimes able to use body language and makes sounds to let us know if she likes something or not. We know if she is happy or sad – and for us these vocalisations are beautiful to hear.
“Maisy’s Epilepsy has also been helped by medication which has reduced the amount of seizures she experiences to between 30 and 40 seizures a day and has given her a better quality of life, as before she was seizing constantly.
“At home, Maisy has different pieces of equipment so she can be as comfortable as possible and her posture is supported, which has prevented a massive amount of deterioration in her condition. However, when we leave the house at the moment, she has just her wheelchair which she finds very uncomfortable. When we go to hospital in London, we are out all day, but she is now too big to take out of her wheelchair very often and there’s nowhere to put her if we do.
“When Maisy is in one position for too long it causes her more stress and pain and this has an impact on the rest of the family too. The special seat she needs would hold her in a really good position and make her so much more comfortable. It could also be positioned to maintain her airways during a seizure so we know she would be safe.
“Maisy is home schooled due to her extreme vulnerability and extreme care needs, so this seat would also enable us to go out and about with her for longer periods of time so Maisy could enjoy outside activities and days out. The seat would help Maisy her maintain a good position for when we feed her outside of the home.
“Maisy would be able to wear the lycra suit when she left the house using the mobile seat, while her wheelchair would be used for shorter periods when she wears the spinal brace. We just want her to be in as little pain as possible, to be as happy as possible and have as much choice as possible.”
“Having this seat would be a dream come true.”
If you would like to help Maisy, visit www.newlifecharity.co.uk/essex, read her story and click the ‘Donate Now’ button. Newlife guarantees that 100 per cent of the money donated to help Maisy will be used to fund the special mobile seat. Any surplus funding will help provide equipment for other disabled children in the county as Maisy is one of 23 families in Essex with equipment needs of £15,744 currently working with the charity.
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: Maisy with sister Poppy