Help us to get Arni surgery!

As a family, we’ve made the decision to fund part of Arnis care privately, the urology side of his care, as it’s the best and fastest way to get his surgery and getting him right.

We can’t face the nhs waiting lists what are years long, the option is there to get them done privately by a world re known urologist and therefore he can get the first surgery done as soon as possible privately.

The waiting list on the nhs would be 3 years approximately but could be longer, even though he’s classed as severe and there is risks with waiting. Also while he waits he’s in pain when he urinates, got fluid on his kidneys, fluid in his abdominal cavity, urocele, pelvic renal dilation and stricture which is narrowing of the uretha, he’s suffering in pain and been on daily antibiotics since birth to try to prevent infections, he will be on these until he is sorted so daily antibiotics for god knows how long, even when he’s on them the risk is still there that he could get a infection the longer he waits. He also has swelling what’s visible externally.

As parents it’s breaking our hearts, it’s all been so hard to come to terms with as it was only known at birth how severe it all is. We don’t want to run the risk of his kidneys getting worse or leave him in pain. We have been told that before Covid the surgery wait time would have been dramatically less, even though it’s severe the waiting lists are so long and the wait carries risks we just don’t want to take.

He’s not had it easy with 2/1 heart block, his urology issues and he also has conductive hearing loss in one ear. He is such a strong and happy boy he deserves an amazing life.

As a Mum I feel incredibly guilty he has so much going on but that’s my own battle I face.

We just want to make his life that bit easier and give him the best chance in life in whatever way we can. We want to get him sorted and put all this behind us and the way forward is by funding his surgeries privately. If we could sell our own limbs to fund this we would. We as a family are doing all we can to get together the money ourselves to cover his surgery’s what will be in the excess of 22k, possibly 30k if he does need 3 surgery’s.

We have paid and travelled to London to have a private consultation with a world reknown urologist and we are confident that this is the correct path to take and the best hands he can be in, he is on the waiting list for the surgeries with him, he has said he may need 3 surgery’s but each surgery while he is operating he will do as much as he can in one surgery to save going back in and operating more then 2/3 times. He definitely needs 2 operations the third isnt certain yet.

If he has these on the nhs each issue he has going on would be a separate surgery and separate waiting list with how many issues Arni has going on so that could easily be 5 surgeries and each waiting list is lengthy. Obviously privately we skip waiting lists and that way lessen the amount of surgery’s he would have and can get him sorted so much sooner.

We would never ever usually do anything like this but we are doing this for our baby so pride gets put to one side, we are doing this to give him a long and happy life, the best chance in life.

Please no one put yourself short or feel you need to donate. We know that everyone who knows him or us, loves him and would do what they can to help if they could, so please do not donate if you can’t, we understand times are hard and everyone has there own life going on.

We have made this go fund me due to family members/friends offering to help us slightly just so we can start to get some money together for him.

We are going to remortgage to fund his surgeries, and if nothing gets raised via this go fund me that’s okay, we will remortgage and will cover the higher payments each month, but if anything gets donated via this go fund me it means we can reduce how much we need to borrow on a remortgage and the remortgage would always be there to fall back on if he needs further surgeries or if we ran in to any issues surgery wise what ran up a bigger bill.

As a family we would like to keep this open to anyone who would like donate anything at all, any little helps us get closer to getting him sorted.

We just want to get our beautiful boy on the right path.

If you would like to and are able too, please help us get our beautiful Arni Right and get the right care he needs.

As we said, Please don’t feel you have to help at all, either way we will do all we can to get him the surgery’s done privately as we need him to be well and sorted.

Thank you for reading