We have recently moved into a bungalow so that all the family can be on the same level, Dylan suffers from MPS IIIA which is a rare genetic condition, he is struggling with his mobility and is now in a wheelchair for quite a large amount of the day, he is non verbal and is gradually losing his skills that he has gained.
The project is to extend Dylan's bedroom and the family bathroom to give him the space that he will need as he gets bigger, currently his bedroom is quite small and as he gets less mobile will need to be hoisted through to the bathroom from his bed. The plans are to build a through door directly from his bedroom to the bathroom and extend the size of the bathroom so that we can install a hi-lo bath.
We have had a DFG approved which is £30,000, we are putting in all of our savings but are still short. This project will give Dylan more space to safely move around the house, and more dignity with personal care. Currently we have to lift him into the bath and he is heavy which is causing strain on us.
Dylan was diagnosed with MPS IIIA in December 2014.
What is MPSIIIA?
Mucopolysaccharides (MPS) are long chains of sugar molecule used in the building of connective tissues in the body. In the course of normal life there is a continuous recycling process of building new Mucopolysaccharides and breaking down old ones. This process requires a series of biochemical tools called enzymes. Individuals with MPS III are missing an enzyme which is essential in cutting up the used Mucopolysaccharides. Incompletely broken down Mucopolysaccharides remain stored inside parts of the cells called lysosomes. The lysosomes become swollen and disrupt cell functioning causing progressive damage which is incurable. Many children lose their life to this disease in their teenage years.
Dylan is unable to walk without assistance and uses his wheelchair to get him about, as his condition deteriorates he will rely more on his wheelchair and help from family to help him with daily life. We have recently moved to a bungalow so that the whole family can be on the same floor as Dylan, we have had a Disabled Facilities Grant "DFG" approved which will increase the size of his bedroom and the bathroom. The grant does not cover the full cost of the work which is why we are raising money for the remainder.
We are hoping that the extension and adaptions to the property will give Dylan more comfort around the home, but also to give him the space for his wheelchair to be used more around the house. The adaptions to the bathroom will provide him with a height adjustable bath, which will benefit us as parents.