Louie's fund.

Natalie Mcdougall is organizing this fundraiser.

Donation protected

My son Louie is 6 years old and he suffers from a rare life limiting condtion called SMARD.

This means he has very complex health needs and he needs 24 hour care, he cannot walk or sit up and is on a machine to help him breath (a ventilator) this is connected to a tracheostomy.

Louie suffers with very severe gastro issues and is connected to TPN (intravenous nutrition) every night for a minimum of 12 hours.

This is given via a central line in his chest.

Louie's gastro issues means he suffers from sickness on a weekly basis, he becomes very distressed and he will heave constantly and has lots bile draining from his stomach. He is under pallative care for symptom management, however at the moment none of his current medications are helping and he is experiencing these awful symptoms more often.

It is heart breaking to seeing him go through this and he is so big that I can no longer pick him up and only stand at the side of the bed and stroke his head.

So I've decided to fundraise in the hope that I can buy Louie a double profiling bed (these go up and down with a remote control and allow me to put the bed into different postions)

This means I will bed able to get into bed with him and give him a cuddle and comfort him when he is unwell.

Louie spends the majority of the time in bed, in his bedroom, as this is where he is most comfortable and when he is sick he can't leave his bedroom at all as he needs to be connected to a humidifier.