This weeks blog post is a very very special one! I’ve know Monika for years, but I wasn’t fully aware of what goes on in her life because, well, we are just often to busy to notice things and make time for other people.
On Saturday we met for a quick photo session and then we had a long chat, under the sun, enjoying some coffee while Leon was asleep in his stroller by our side.
Leon is Monika and Joses son. He is three and he is a beautiful and happy child who has gone through a lot in his life.
This is his story:
“We would like to tell you a bit about our gorgeous, courageous son Leon who’s going to turn 3 in November. Leon is our absolute hero, our ray of sunshine and the biggest fighter you can think of.
Life challenged him from the very second he entered this world.. After a very difficult birth,(EMCS), Leon was transferred to NICU in John Radcliffe Hospital in Oxford as he was not able to breathe on his own and doctors were unable to determine what was wrong with him…. Once in there, it was discovered he had developed persistent pulmonary hypertension of the newborn and needed 100% oxygen as his body was not able to produce any… he was put into induced coma and given many different medications, but despite a huge effort from health profesionals, no one could really tell us what was going on and why it was happening. It was the most devastating thing to see, our gorgeous little baby boy lying lifeless in his little incubator fighting for his life… He was so poorly at this point, that he wasn’t given much expectations, but our little fighter was not giving up and his resilience paid off. One day, Leon began to breath on his own… Little did we know that this would only be the beginning of a continuous battle.
After failing the routine hearing tests aged 2 months, Leon was diagnosed with profound bilateral hearing loss (bilateral auditory spectrum disorder).He had his cochlear implants surgery done in January 2017 and he loves his newly discovered world of sounds. He loves being sang to, has his favourite nursery rhymes and recognises a few simple words. But unfortunately, it was not all that simple. The MRI scan Leon had done before his implants surgery, showed some brain abnormalities.. We were soon to find out that this would bring a whole new world of challenges, which we are faced with almost every single day.
The scan showed that Leon had microcephaly with small frontal lobes and small anterior corpus collosum. Although we went through (and still are) a miriad of genetic tests, we were not given any diagnosis yet and are still uncertain of what the future holds for our Leon. We know he’s got global developmental delay, evolving motor disorder and he is dependent on us in all aspects of his daily life. He cannot walk, crawl, feed himself and he is not able to communicate meaningfully yet. He is able to sit down although he can loose his balance very quickly and he still has some jerky movements of his arms and legs as well as trouble with fine motor skills. Over a year ago, Leon started to roll his eyes and subsequently he just has been diagnosed with epilepsy (lesional epileptic absences). This episodes are frequent and sometimes can go on for hours. I have to mention that despite all of his limitations he is extremely cheerful, happy and social toddler who enjoys exploring his new found world of hearing, loves playing with his toys, adores being around kids and has the most amazing and contagious laughter ever! Plus the happiness and excitement showed on his face when he sees his daddy is absolutely priceless!
As we still not sure what is really happening medically though, we are trying to do our best to help our baby boy. The first step is to get him on his feet so he could finally feel for himself the amazing world of walking and feel the freedom it brings.
But there is a long way ahead of us. He is not able to stand, his body is very chaotic, he doesn’t have balance, he bends his feet in all directions, locks his legs and arms in joints and sometimes behaves like a child with celebrar palsy. We now needed to turn to private help. We have started with appointments with a professional therapist who does NDT Bobath, and we are able to see small improvements already. We have also booked Leon for a two-weeks physiotherapy camp in a special physiotherapy centre, where he will get specific treatments tailored to meet his needs, and physiotherapy sessions every single day. ”
If you want to read more, you can do some here.
Now please look at these images, but really LOOK at them and notice one thing. The TRUE LOVE these people have for one another.