Weʼve raised £15 to Give Sebastian a chance for a better life!
- London, United Kingdom
- Health and medical
- Time left
- Funded on Sunday, 12th November 2017
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The page owner is responsible for the distribution of funds raised.
We are raising £20.000 to help Sebastian with therapies that will improve his quality life!
Our story starts with a very long labour, induced at 37 weeks because of my hight blood pressure. 51 hours of terrible pain, at some point my baby's heart rate dropped for 3 times. Midwife panicked and in just 1 min, all the doctors were inside the room saying that I needed C Section. But they didn't do it. I was agonizing for other 6 hours, not beeing able to push him out when it was the time so they had to use the ventuse.
Sebastian was hypothermic, his temperature was lower than a thermometer could read and couldn't swallow. They took him to NICU and realised my baby needed Oxygen. They did a scan to his head and saw some changes. At the MRI scan it was shown a huge damage to his brain, his brain was bleeding. We will never forget the day when they gave us the worse news we could ever hear. Our baby, who suposed to be perfectly healthy has now his brain damaged and his future was predictable with severe disabilities. We were devastated, we couldn't stop crying. I remember how much I wish that was a dream, but it wasn't. It was the reality my baby has to fight with for the rest of his life. I've done everything right during my pregnancy and doctors failed! What a life!!!
When we were discharged, after 6 weeks, Sebastian was Oxygen dependent, feeding via nasogastric tube, had spasticity, dystonia and arching his back that much that all he could do was to scream for pain. Struggling to find moments of relief, my sweetie was able to sleep 2 hours a day. It was a huge challenge to hold him, dress him up, undress, change nappy, feed him, couldn't stay into the car seat or pram, he had medicines 16 times a day. We lived a nightmare for about 6 months when doctors said that Sebastian needs to be sedated and we decided to go abroad finding solutions for him.
We tried so many therapies like Hyperbaric Oxygen therapy, Advanced Biomechanical Rehabilitation, presopuncture, Bowen therapy, Anat Baniel Method, Osteopathy, Chiropractical, Physical Therapy, Physiotherapy, Ocuppational Therapy, Speach and language therapy and improve Sebastian's life. He is 16 months old now and has microcefaly, can't hold his head, can't sit or roll, barely eats with the spoon, visual impeared, selects the sounds he likes, doesn't babbling, can't coordinate his arms, can't sleep more than 3 hours, he is very stiff, has dystonic movements, has scoliosis because of the bad posture of his body, spasms during his sleep, fast and short breathing, his brain stopped growing 10 months ago. But he doesn't need Oxygen anymore, can eat orally and he doesn't arch his back anymore. We are now starting a new development program that comes from America and hopefully it will be what Sebastian needs the most.
We spent in just 1 year and a half more than £20.000 and the first 5 years of his life are the most important for his brain development. His dad works 16 hours a day and that is still not enough. We'll fight for a better life for Sebastian, no matter how much and how long would that take!!!
Please visit Sebastian's blog for more details:
Updates appear here
MARIA MANUELA DANILA started crowdfunding
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Oct 2, 2017
My heart goes out to little Sebastian and his family. Stay strong.
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