With the heaviest of hearts, we received yet another diagnosis to poor little axls long list. They have confirmed Axl has cerebral palsy. Not only is his vision impairment, heart defect, hormone deficiencies, brain abnormalities and weakened nervous system been setbacks, now this hurdle. From day one, the little king started his journey off with sepsis, a lung infection and pneumonia. The first month we discovered a tumour in his right neck muscle. Then by month three there’s pretty much been a new diagnosis every other month. Throughout everything, he have proven to us, his medial team and everyone around him that he is meant to be here. For every bad day, every new set of results, every therapy appointment, every endocrinology appointment, every neurologist appointment, every X-ray, every mri, every scan, every negative sit down with bad news, every stranger poking and prodding him, Axl has showed us just how lucky we are, how capable he is and just how much he will blow us all away. He has been fighting ever since that Monday he was born. He hasn’t stopped. We’ve been fighting for him, advocating, demanding, researching EVERYTHING that’s within reach and then some. This little boy hasn’t had an easy run, most likely he medically shouldn’t be alive. With this new diagnosis, it changes things. In 2024 we had booked In a date to take Axl to get stem cell therapy in Thailand. Which is still very much going forward. However, we need to now focus on two MAJOR things- bilateral blindness from an incredibly rare condition called optic nerve hypoplasia/ septo optic dysplasia And cerebral palsy which is obviously now more costly as it’s more intensive and therapy is a lot more tailored to axls needs. In the mean time, while saving for axls stem cell treatment, we are now taking on additional practices to minimise pain for Axl. As cerebral palsy can be incredibly painful as the muscles contract and become stiff. I’ve decided it’s best to leave my job to be with Axl 24/7 to support his needs, meaning Axl can be better cared for, attended too and therapy five times a week. This all has come at the perfect time but also the worst news. How incredibly lucky are we to have a diagnosis for this at such a young age so we can better understand and help Axl. But how incredibly cruel he has had all these terrible diagnoses stacked up against him with no choice. His quality of life is our main concern, it’s unknown the extent of brain damage and whether or not Axl will be able to walk or communicate. It’s day by day making sure he gets absolutely every single chance he can to thrive and live the life we so easily get too. We’re asking, if you have the means. To donate absolutely anything toward getting Axl treatment, everything is appreciated beyond belief. We’re so thankful to have so many people cheering our little king on, He’s something so incredible, we just want to give him the best life we possibly can —————————————————— Hi guys! As some of you already know our beautiful boy, Axl was born blind. He has an extremely rare condition called optic nerve hypoplasia which means as part of underdevelopment in his optic nerves and other parts of his beautiful baby brain. To give you an idea of what that means; the main pathway that connects the eyeball its self to the brain is very small causing him to be blind. There’s belief Axl may have some chance at regaining some Vision through stem cell treatment. Which is absolutely mind blowing that Axl could have a future that involves being sighted. In order to get stem cell treatment that’s safe for not only his age but other health conditions we would now have two options; We would fly to Germany and get treatment there over the course of several weeks where he would have a full medical team surrounding him 24/7. Which is non invasive, but a long and costly process Or we have been invited to go to Thailand and get stem cell treatment that is invasive, which requires a needle of stem cell injected into axls optic nerves over the course of weeks and trialing if that works for both his sight and movement of his body. Both are incredibly amazing options and we are so lucky to be given the opportunity to assist with Axls quality of life in the coming years. However, there is a time frame of effectiveness which is before Axl turns two. It’s such an immense amount of pressure to have that opportunity and potentially miss it due to not having that money outright while paying for all his existing medical. We’re so lucky to have the support we do, and all the donations we have received were are incredibly overwhelmed with the generosity and kindness each of you have shared, so thank you so much and one way or another we will be going to Germany or Thailand in 2024 to help our baby have the gift or sight that we so easily take for granted. Thank you so much, from our family to yours.
Artículos relacionados
