A wish come true for Cohen

Even if you can't Donate money which is completely understandable considering the cost of living crisis we are all living through if you or anyone you know could Donate materials for pool fencing,cementing, verandah,electrical to reduce the amount we need to fund raise that would be absolutely amazing ❤️

This is a very long story and if you read it all i thank you so much for your time. Even if you can't donate and I completely understand if you cant given the cost of living and so many people struggling to get by week to week a share is just as good .

Our Son Cohen was born with 2 rare brain disorders on the 1/11/2014 , we didn't know that anything was wrong during my pregnancy with Cohen there were a few things that didn't feel quiet right and were very different to my previous 2 pregnancies but I was continually told everything was fine and I'm just over thinking things and all pregnancies are different. I went into labour and even the labour was very different to my previous 2 it was a strange burning pain rather than normal contractions and the labour was slow but I was constantly told no it's just back pain you'll be fine and so will your baby you just need a heat pack on your back.
The contractions/burning pain got more intense so I had fentanyl for pain relief and I felt like i needed to get up and stand and my waters broke except it was barely a trickle it was more like a few drips that came out and it was time to push pretty quickly after that,
I started pushing and the midwife said the head was crowning and i gave birth quiet quickly but there was no sound and all of the midwives/ nurses were silent and then I suddenly needed to push again and Cohen was born.
Some of the nurses had quickly rushed away with what I'd first birthed and had thrown it away saying nothing to me about it from then on. I later found out by requesting my files that they said I'd birthed a sack of membranes prior to a healthy baby boy.
Except that wasn't going to be the case , Cohen was born with his feet flat against his shins and the nurses brushed it off when we asked what is wrong with his feet and said oh we don't know you'll need to ask the paediatrician when he comes around.
We also noticed quiet quickly that Cohen looked very different to our other 2 children and he couldn't breast feed at all so he went hungry for the first 24hrs because the nurses refused to give formula and said your baby is hungry just feed him. They then said the only way your going to get formula and a bottle is to walk down the street but nothing is open its midnight so you just need to feed him yourself , which id been trying to do for hours and hours and he just keept crying because he was so hungry.
We got discharged the next day and got formula and bottles and he finally got to eat and was content, but that didn't last very long because every time we tried to give him a bottle after that there was a lot of milk running out of his mouth and he would just scream and would be inconsolable so we made many trips to the hospital and we got the usual oh its likely colic or he's just adjusting to life outside the womb ect and we got sent home.
But then we noticed he had lumps in his groin that kept coming and going and every time they were visible he'd be crying in pain so we took him back and found out he had bilateral ingunial hernias and he would need surgery ,so he had the surgery and came home but he was still not feeding properly so we went back a few more times until we got one dr in emergency that noticed some of cohens features just didn't look right to her.
He had positional talipes which is why his feet were flat against his shins at birth, microganathia (small jaw) , a high arched pallet which is why he couldn't feed properly, his head looked small and misshapen (Microcephaly) and he was low weight so she admitted him and inserted a naso gastric tube for feeding as he was dehydrated and starving and then all of the scans and blood tests and investigations began.
Then Christmas eve came around and we asked if we could go home as we have 2 other young children and tomorrow is Christmas, so after a few hours they called us into a room and said unfortunately you can't take Cohen home and when we asked why they said because he has 2 very rare brain disorders, our world just crumbled in that moment and fear and heartbreak set in. I said ok so what are the brian disorders and why cant we take him home for Christmas now that you know what he has and the dr said the brain disorders are called Lissencephaly (smooth Brain) and microchephaly(small head) so i said well surely he's not going to pass away if we take him home for 1 day.
That's when they said we'll actually we don't know if he will , these brain disorders are rare and we don't really know much about them at all.
But In the end we got a crash course on feeding via a naso gastric tube and bought him home for Christmas.
But on Christmas day we had to rush him back in the morning as we just couldn't get any feeds into him so our other 2 kids had to spend Christmas day with family and we spent a little longer in hospital with Cohen, we were told he will likely not make it to his 2nd birthday and if he does he wont meet any milestones and will likely be bedbound so we need to consider end of life decisions ect.
From there all of the constant hospital appointments and therapy appointments began and cohen started to suffer with epilepsy and we almost lost him due to one of the medications they put him on put him into status eplepticus ( a continuous seizure) but thankfully he is a little fighter and he managed to pull through.
We finally managed to get his epilepsy under control and then his spine began to curve to the left , we got many different braces for Cohen's back to try to prevent the curvature from progressing but he couldn't tolerate any of them as they'd trigger seizures.
The drs kept saying oh its OK his spine is still flexible and he go's straight when you hold him up in the air so nothing was done and it slowly became severe, his pelvis has rotated and his right hip didn't develop properly either so there is a constant risk of dislocation.
Cohen also had bilateral adductor release surgery to try to help with the scissoring of his legs but sadly that didn't help with the scissoring because it became a behavioural problem so We started hydrotherapy for cohen to help with the pain of scoliosis and also extremely tight calf muscles.
He absolutely loved it and it helped so much but once covid hit hydrotherapy was put on hold and since then it's been to risky to take him to a public pool and he doesn't cope well leaving the comfort of his own home or being in a car seat as it causes to much pain.
We have now applied for a wish from the make a wish foundation and cohen was approved for a wish and the wish journey began, his wish is to have a swim spa at home so we can do regular hydrotherapy for cohen with his physio at home where he is most comfortable.
It will be a wish that will continue to give for years to come and it will make such an incredible difference to cohens life , it's a wish that is specific to Cohen.
So the make a wish foundation are more than happy to grant this wish but the only thing is they will only pay for the supply and delivery of the swim spa, understandably they have many many other children to grant wishes to and a swim spa isnt cheap. So to help make Cohen's wish come true we have to pay for the rest that will come along with that such as a cement pad , a verandah so cohen has protection from the sun while using the spa, pool fencing, a heatpump and filtration system enclosure, council approval costs and an electrician.
This is a massive cost and we don't know how we will come up with that sort of money in the next 12-18 months which is the timeline we have been given for cohens wish journey .
I have had many people suggest I make a fund-raiser to try to raise the money needed to make cohens wish come true, but
Asking for help is something I rarely ever do I'm usually the person helping everyone and I find it very difficult to ask for help even when it's really needed. But this is something we just can't do on our own and it's something that is for Cohen and not ourselves so after so many suggesting it I thought id give it a try.