Mason's Profile

Name: Mason

Age: 5

Request: Electric Wheelchair

Cost: £6,000

Condition: MPS 1 Syndrome

What is MPS 1? Mucopolysaccharides are long chains of sugar molecule used in the building of connective tissues in the body. There is a continuous process in the body of replacing used materials and breaking them down for disposal. Individuals with MPS I disease are missing an enzyme called alpha-L-iduronidase which is essential in breaking down the mucopolysaccharides called dermatan sulfate and heparan sulfate. The incompletely broken down mucopolysaccharides remain stored in cells in the body causing progressive damage.

About Mason:

Mason is a fun loving little lad, who loves life, but due to his life threatening condition this is limited. He has already had many operations including: A bone marrow transplant at 7 months, operations to try to straighten his back & many more plus more to come. There is no cure for MPS. Mason is on oxygen 24/7, he can walk for very short periods, mostly around the home. He suffers from joint pain & stiffness, his eye sight is deteriorating

Mason’s Request:

 An electric wheelchair will give Mason the independence any child deserves. His condition will only worsen, so having this chair will help improve his quality of life. His mum said “We are unsure how long we have Mason, but would like to make as many memories as possible with him, this chair will certainly help us do this”. The electric wheelchair, will give the freedom he warrants.

Jacob's profile

Name: Jacob

Age: 3

Request: P.Pod chair

Cost:

Condition: Muscular Dystrophy/ Leukodystrophy/ Osteogenesis/ PEG

What is Muscular Dystrophy? A progressive muscle weakening & wasting condition, that gets worse over time, leading to increasing level of disability. What is Leukodystrophy? Leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient. What is Osteogenesis? It is a disease that causes weak bones that break easily, also known as brittle bone disease. It can also cause many other problems such as weak muscles, brittle teeth, and hearing loss. Gastrostomy PEG? Feeding tube through the stomach.

About Jacob: Jacob is a happy 3 year old, who is intelligent & fun loving. He has had issues from a young age & diagnosed with muscular dystrophy at age 2 ½. The muscular dystrophy affects all muscles in his body, particularly his legs, lungs & his swallow reflex. As a result he is unable to walk, has to be PEG fed & is susceptible to infections inc; pneumonia, where he often has long hospital stays.

 Jacob’s Request:

Jacob loves doing what boys do: Playing with his toys, doing arts & crafts as well as reading. The P Pod would give him the chance to do what he loves doing the most in comfort &  with the support he needs, as at present he doesn’t have supported indoor seating that he can use for a prolonged time. It will also help his posture & alleviate pressure sores.

Logan's Profile

Name: Logan

Age: 8

Request: Mobile Sensory Unit

Cost: £5,200

Condition(s): Severe Spastic Quadriplegia Cerebral Palsy GMFCS5/ Epilepsy/ Registered Blind (severely sight impaired)/ Tracheostomy/Scoliosis/ Gastrostomy.                      

What is: Severe spastic quadriplegia cerebral palsy GMFCS5? It’s the most severe of the three types of spastic cerebral palsy, marked by the inability to use the legs, arms and body. Scoliosis? Is where the spine twists and curves to the side. Gastrostomy? Feeding tube through the stomach.

About Logan:

Logan has no independent movement & relies on adults for all his personal care & needs. He is unable to support any part of his body, therefore totally relies upon specialist equipment to support him. He has limited communication & activities that he can access without significant support, & has cortical visual impairment which means his vision & processing is limited.

LOGAN’S REQUEST:

Logan is unable to access any form of entertainment independently. He very much enjoys having non-invasive entertainment e.g. projection, lighting effects, visual & audio equipment He also finds day to day life quite tiring, therefore spends a large portion of his time in bed or in very reclined positions, these activities will help him to have a great balance between stimulation & relaxation. Logan has spent large amounts of time in hospital followed by long periods of recuperation at home, this equipment would give him a much wider range of entertainment than he has currently & it would give him a lot of pleasure.

 

ANOTHER SERVICE

Another service we will be offering is to children that have life threatening conditions that find themselves regularly in & out of hospital such as: Cancer, Leukaemia, Kidney Failure, Heart problems etc. We can offer these children smaller items that can be taken in & out of hospital to keep them amused, items such as Portable DVD Players (we had one for Ben & it was invaluable), Portable game consoles etc.