PLEASE HELP, Spence needs a hydrotherapy pool .

First of all however you landed at our page I thank each and every one of you for taking the time to read this.

 

This is Spence he’s my 17 year old son that has many complex and demanding needs. Some of these include being blind,

horizontal nystagmus,

cerebral palsy, that affects all 4limbs (quadriplegia)

schzencaphally (split brain syndrome caused by a foetal stroke)

cerphalic cyst on the brain with hydrocephalus

sabre tibia (bent legs)

increased muscle tone

global developmental delay

hip dysplasia

life limiting breathing conditions

obstructive and restrictive apnea

incontinence

autistic spectrum

the list goes on….. and they keep adding to it the older he gets.

 

 

For most of Spencer’s life we have been in and out of hospital and I have lost count of how many times I have sat with my head in my hands not knowing what the doctors were going to say next.

I JUST PRAYED

For 17 and a half years I have been the soul carer of my son and never had respite or help, I’m not Wonder Woman but some would argue.

Spence however is a super hero, he’s my hero.

 

SO…. here we have it I’m going to lay it on the line and actually ask for help. I never have and never thought I’d need to but what he needs is just beyond my capabilities.

 

When Spence was going through education and boy is he bright he would attend swimming in the hydrotherapy pool that was situated in the main hub of his school that he attended every day. Along side this came an extensive physiotherapy programme with some of the best in Gloucestershire.

He had Botox injections that give him some movement and release some of the increased “spasticity” << I hate that word but that’s the actual medical word for it!!! We call it tight muscles.

 

COVID-19

During lockdown he became bedridden as sitting in his wheelchair became more and more painful I was reluctant to let help in as this virus was affecting the vulnerable and Spence was on oxygen.

spence stops breathing 18.9 times an hour when he’s asleep and now has a CPAP machine that forces the air into his lungs.

 

 

During the pandemic he missed vital Botox operations and medical appointments as it was deemed unsafe so we were put in the shielding group: high risk!

I was also afraid that if he caught it or god forbid myself of my other son brought it in that Spence wouldn’t be able to fight it as any of us could.

I watched as people died and crossed my fingers that staying in was the best thing to do. whilst staying in and not attending school Spence became quite poorly and it result in an ambulance being called out on Christmas Eve…

HE COULDNT BREATHE. Again I just prayed.

After the crew stabilising him I was adamant that I would do whatever it takes to keep him happy and comfortable as it’s not his time yet.

(later about that)

 

spence had the use of a lazy spa that was in my garden but after asking for a hoist I was told point blank No by occupational health.

”you have one in his room” is what was said !!!

So…. in true Spencer’s mum style I thought of Mohammad can’t climb the mountain then mum will bring it to Spence or something like that

 

 

ok so the lazy spa/hot tub WAS placed in his bedroom and yes people said I was mad but at least he was able to get some relief in the form of 40c bubbly water that sooth his aching dislocated hip.

This is only while he is waiting this surgery that will improve his quality of life. The surgery it’s self keeps being cancelled to lack of intensive care beds (covid related and because HDU beds are in high demand anyway in Bristol children’s hospital.

 

 

MEANWHILE he is having physios now coming into our home telling us that we HAVE to remove the Hotub as they need access to both sides of the bed for moving and handling he’s 2:1

however I have done this alone for 17 years.

 

What I think I need to now tell you is how much pain this child is in. I fight constantly with holding back my own tears and having to walk out of the room, some of the things he says I can’t listen to in fear it will break me but the truth is it breaks me every day to listen and watch what he goes through. We now have Carers 12hrs a week to help. This gives me a bit of a break away and some me time…. Housework and food shopping more like. ‍♀️ But still a break away from my caring duties.

 

SPENCER’S up and coming operation

Right patella removed (knee cap)

double hamstring release (cuts at the backs of the knees.

hip implant

Botox in left arm

intensive care to monitor breathing and HDU bed needed as he’s a CPAP child.

apart from this it’s straightforward they tell me.

 

this next bit is gonna hurt me to talk about

 

HEAVEN

ouch ouch ouch

maybe I’m selfish but I never wanna let him go there, well not before me anyway. We are not supposed to bury our own children.

 

children with Spencer’s condition very rarely make it to their 3rd decade so end 20’s I’m told but the truth is nobody knows, not even the Drs.

 

Spence will often talk about going to heaven and when asked why he wants to go he says,

“ its just to painful here mum”

I can’t even begin to explain to you how much this hurts me. 

I wish I could take the pain away and although I prefer the holistic route with him in the form of massage oils and wheat bags we have surpassed that now and the drs have prescribed paracetamol and codine, I’m not a fan!!

 

I asked for a hot tub from make a wish foundation and due to us leaving the EU they now have lost the contact with the company they dealt with and are not paying for Hotubs any longer. They have said an inflatable one is all they offer.

 

THIS IS WHERE YOU ALL COME IN ❤️

 

by the Power of numbers and everyone just giving a little bit I’m hoping to raise enough money to fund Spence an outdoor hydrotherapy pool. It needs to be sunk Into the floor to enable lifting equipment/hoist to pick him up. It will need a cover/shelter pergola type structure over the top as I want him to be able to use it all year round: patio heaters needed too. I will post a picture of the sort of thing I mean.

 

composite decking so that it never gets slippy and all of this must be wheelchair accessible. It’s a lot of work and will probably need a mini digger! Spence is obsessed with diggers so he wants to product manage it all. 

 

I know £10,000 is so much money and im not expecting miracles but I do believe in them,

after all they said I couldn’t have children.

I have two beautiful boys.

Spencer’s never going to get better in fact what I have to do is watch him deteriorate over the next 10years.  

With your help we can make his life here a little bit more comfortable.

THE ANSWER IS WATER.

He becomes weightless, he kicks his legs and when you take away gravity he can actually move.

 

All I can say is that I love him and I will do what ever I have to within my power to keep him from suffering.

 

please help

love from Emma xx

 

 

If anyone would like to follow myself and or Spencer on social media then here are the details:

tiktok:

@soccerball141

@emmajaynepowell

insta: emmyjay Nottingham

Email:[email redacted]