Jaces sensory garden

This little boy with those big beautiful eyes and beautiful little face is my world, 

his name is Jace.

You see Jace was born with a terminal illness called nonketotic hyperglycinemia (nkh) this illness has no cure and is so rare it effects about 500 people world wide. 

What is nkh..? 

 Basically Jaces body produces somthing called glycine, we need this for brain function. Our bodies have enzymes that break the glycine down, so the glycine doesn't rise too high, as it can cause damage to our bodies. In Jaces case he doesn't have the enzymes to break down the glycine, so the glycine  rises and causes damage to Jaces brain, resulting in him being non verbal. He suffers with seizures throughout the day, every day. He has developmental delays, he's partially blind, he's severely disabled, he has scoliosis, both of his hips are dislocated and he also suffers with dystonia. 

Due to the amount of damage to the main nerve in Jaces brain, he has also deteriorated over the past year. 

This has now caused Jace to suffer with dysautonomia. This is where the brain stops sending, or doesn't send enough signals to some of Jaces organs like his  heart, bladder, the nerves to give him colour (he goes extremely pale) very sleepy and floppy and it effects his breathing resulting in many hospital admissions in high dependency.

Due to his deterioration we have been told if it carrys on he wont be with us long.

 He has been in and out of hospital so much over the last year that we haven't been able to make memories with Jace the way we would love too. He is missing out on so much that life has to offer...

so as it's Jaces 4th birthday on April 14th we have decided to try raise money so we could make him a beautiful sensory garden at home. 

 we dont know how long we have with Jace as most children with nkh don't live past toddler years, so while Jace is with us we just want him to be able to experience everything he can ,the things a normal child can and too enjoy the time he has left with his family the best he can . X