Daimen: Keeping our family together & afloat

Hi, my name is Leigha, I am a mother of two amazing young boys aged 4 & 9 1/2. My oldest, named Daimen, has (since birth) had a rare, life-shortening, neurological condition called "Hydranencephaly".

The easiest way to describe it is that it is very similar to cerebral palsy, but instead of trauma to the brain (which is present in cerebral palsy), he actually has large components of his brain missing/parts that never actually formed/are not there. He is non verbal& non mobile. Along with this he also has Cortical visual impairment, gastroesophageal reflux disease, hypertonia, and (more recently, 4 years ago) suffered a mid-gut volvulus resulting in him loosing almost all of his small intestines. This means he has since (& will permanently be) using & relying on a TPN PICC line for all his nutritional needs & requirements. (A TPN PICC line is a catheter style tube that goes in through a main artery in his arm and up into his heart to deliver all his proteins, nutrients, fats ect. Directly).

Despite all this Daimen is a very happy and aware boy & has enjoyed an amazing life in his short time here with us. He is nothing short of a warrior. Despite being told he wasn't going to make it out of hospital at birth, let alone live a year, at 9 1/2 hes a living miracle. Hes endured numerous surgerys and has always kept a smile on that amazing face of his.

Unfortunately, Daimens light is now fading... We've been admitted into hospital 16 times in the past year with our more recent stays ending up with us currently staying at Canuck Place Childrens Hospice. Over the xmas holidays Daimen developed pneumonia (a difficult thing as he already has some pretty serious respiratory issues that have developed over the past year; Sadly par the course for kids with his condition) & as of the 1st of January 2023, his heart has begun to fail him as he experiences severe & randomized bouts of Bradycardi. (Very low heart rate), with his heart rate often dropping down as low as 29-31. (Healthy heart should be around 86) . He had a code blue called and had 3 more episodes lile that between jan 1-2nd and was having them almost daily since.

Since being in hospice at Canuck place he has leveled out a bit, but has had a few more episodes since and remains on constamt monitoring. We have had the insurmountable task that no parent or caregiver ever wants of holding him during these scares, expecting to loose your child, planning end of life care and options, the painful task pf going over various senarios for DNRS or similar, and being told; "This is it. He is in his final stages. He may give you hours, days, or even some months, but we cant tell you a specific time frame. Only that his body is tired, and his light is fading. "

This in itself has been more than any parent should have to face, handle, or endure; But, unfortunately, life doesnt stop for anyone. We (myself, Daimens stepfather/my youngests bio father Ryan, & my youngest Calvin) are a low-income family. Day to day bills are already a struggle, let alone with Ryan having to constantly take time off of work so i can be with Daimen or come home from work as the hospital called me and i have to rush there. Having to choose between being there for my palliative son or pay bills breaks my heart. And then theres the even harder part to think about.... When he goes, how will we possibly afford to survive? I will be in no shape to care for my little one as i grieve the loss of my oldest, so i will need Ryan & childcare. And what about him? Ryan will be forced to attend work almost immediately after (2-3 days after max) leaving him no space to grieve himself or be with & help his family make it through this unfathomable time. But what choice do we have? If not we will fall even further behind on bills or potentially even loose our home if we dont pay our rent.

So it was suggested to me to try to set up a GoFundMe. Im rather new at this, and asking for help isnt my strong suit, but what have we got to loose at this point? We are asking for help/funding to help offset the cost of our bills, childcare, & potentially funerary costs during this incredibly difficult time for us. Anything and everything is appreciated beyond measure.

All i want is to be able to focus on my child and family, nothing more. Time is precious & my little man is not long for this world; i just want to spend as much of it by his side as i can ❤