Please help Alfie get treatment for CRPS

My name is Hannah and I am fundraising to get my 15 year old son Alfie to America for treatment to aid what is nicknamed the “suicide disease”; CRPS (Complex regional pain syndrome). It is a condition associated with the imbalance and malfunction of the autonomic nervous system Alfie has suffered unimaginably with CRPS for over 3 years. It all started with a sprained ankle and he has now lost the ability to walk and eat and is in horrific pain 24 hours a day. The pain started in his right leg but spread to his left leg shortly after. He suffers with severe allodynia meaning the lightest touch to his lower legs, be it from a feather or the rain or wind causes pain that leaves him screaming and crying. With no explanation his legs change colour from pink to purple with burning red patches and can swell and remain swollen for days or weeks on end.

Over two years ago the pain spread to his stomach causing him to be fed first by an ng tube, then nj and now following a jejunostomy operation he is fed via a tube directly into his jejunum as even a drop of water in his stomach causes immense pain and vomiting.

Over a year ago he also lost the use of his right arm so his left arm is his only working limb.

He is unable to go to school and do all the normal things his peers are able to do. He spends most of his time in bed as the smallest of tasks feels like he has run a marathon and exhausts him. He takes a myriad of medication, some to help the pain (they don’t) and has to be sedated to sleep at night or he doesn’t sleep a wink due to the pain.

He is recently home from a 5 month stay in hospital as his weight had reached an all time low. Unfortunately although he is now home he is hardly better off having only gained a couple of kilos and his pain from feeding is at its worst. He begs for me to turn his feed off daily but there is no other way to get the nutrition in so he has to endure the pain or die.

Prior to his accident he was full of life, loved sport, doing brilliantly at school with so much potential. It’s is truly heartbreaking that CRPS has taken practically everything from him.

CRPS, is classed as the most painful chronic pain condition that is known. It reaches approx 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, higher than amputation of a finger without anaesthesia… and the pain is constant.

We have recently found out about this potentially life changing treatment from another mum of a boy suffering with CRPS. Dr Rhodes from Texas has created a magic machine called VECTTOR and a trip to see him and to bring the machine home could put Alfie in remission and leave him pain free. Whether he will be able to walk again remains to be seen but to be free of the debilitating pain will give him back so much quality of life.

I can’t put into words what this will mean to us and we are so grateful in advance for any donations or simply for sharing this page and creating awareness for this horrendous illness.

Thank you x