#RunningforReu.
Donation protected
You may have already seen our Gofundme page which was set up to raise money to buy sensory equipment for reuben, the money people have already so kindly donated has gone towards equipment and we are slowly heading towards setting up reuben his own sensory area.
As some of you may already know reuben has a rare brain condition called Alobar Holoprosencephaly which means that his brain is severely undeveloped, as well as hydrocephalus, dystonia and diabetes insipidus.
Due to the hydrocephalus reuben has a shunt which drains the fluid from his head into his stomach to prevent pressure building around his brain, so far reuben has had 7 operations on his head to replace malfunctioning shunts as well as a infected shunt(viral meningitis) which resulted in his shunt being removed and an external drain being fitted from his head to remove the excess fluid whilst treating the infection.
Reubens dystonia can cause him a lot of discomfort and we are getting on top of it with medication but it is just one of the things that we have to deal with on a daily basis as well as reuben being fed through an Ng tube for 13 hours continous a day, with violent reflux reuben is frequently sick and in discomfort from the acid coming up into his throat. we are current waiting for reubens gastrostomy( he will then feed directly into his stomach) and a fundoplication( this is a procedure where the top of the stomach is tied smaller to prevent stomach acid rising) this is booked on the 10th of January and we cant wait for reuben to enjoy being full and comfortable!
We want to give reuben the most stimulation we possibly can to make his life fun and help his development along as much as possible. We so much appreciate the money that has been donated so far and it has helped buy the start of reubens sensory area.
Now to raise more money and to be able to keep buying sensory equipment and supportive furniture for reuben , my mum has decided to work towards a run every month of 2017, including half marathons, 10K's ect..
Any money donation however small towards support my mums(Katherine Healey) efforts and providing reuben with the equipment he needs is muchly appreciated.
As some of you may already know reuben has a rare brain condition called Alobar Holoprosencephaly which means that his brain is severely undeveloped, as well as hydrocephalus, dystonia and diabetes insipidus.
Due to the hydrocephalus reuben has a shunt which drains the fluid from his head into his stomach to prevent pressure building around his brain, so far reuben has had 7 operations on his head to replace malfunctioning shunts as well as a infected shunt(viral meningitis) which resulted in his shunt being removed and an external drain being fitted from his head to remove the excess fluid whilst treating the infection.
Reubens dystonia can cause him a lot of discomfort and we are getting on top of it with medication but it is just one of the things that we have to deal with on a daily basis as well as reuben being fed through an Ng tube for 13 hours continous a day, with violent reflux reuben is frequently sick and in discomfort from the acid coming up into his throat. we are current waiting for reubens gastrostomy( he will then feed directly into his stomach) and a fundoplication( this is a procedure where the top of the stomach is tied smaller to prevent stomach acid rising) this is booked on the 10th of January and we cant wait for reuben to enjoy being full and comfortable!
We want to give reuben the most stimulation we possibly can to make his life fun and help his development along as much as possible. We so much appreciate the money that has been donated so far and it has helped buy the start of reubens sensory area.
Now to raise more money and to be able to keep buying sensory equipment and supportive furniture for reuben , my mum has decided to work towards a run every month of 2017, including half marathons, 10K's ect..
Any money donation however small towards support my mums(Katherine Healey) efforts and providing reuben with the equipment he needs is muchly appreciated.
Organizer
Ellysse Healey
Organizer