Adam was delivered Emergency Meconium C-Section after a very long traumatic labour . He was in distress for a substantial amount of time. Once delivered Adam was without oxygen for a significant period. We later found out that mum and baby were lucky to survive the labour. Adam sustained a stroke to the brain, and multiple chest infections due to the complications during birth.
He was sent to the Intensive Care Unit (ICU) where we remained for 3 weeks.
In ICU genetics were quickly involved in Adams care. He had multiple abnormal features that indicated genetic issues. (Fisted hands, Curled toes, Low hair line, upward nose, small chin, suspected visual abnormalities, hearing loss... list actually goes on & on). Genetic testing did not find a name for Adam's condition, and the search continues. We have enlisted in the 100K Genome Project which is an initiative to find and detect more genetic abnormalities in the hope early testing will pick up these conditions, so little babies like Adam get the much needed support earlier on, and all relevant teams can support babies and families. This is an issue we faced and its so incredibly hard to find the resources and teams you need when you haven't got referrals in time to help your child early when its the most important.
The fact that we are still waiting for a diagnosis shows how rare Adam actually is. Many children go undiagnosed who have underlining genetic disorders their whole lives. The world of genetics is vast and scary and ultimately you realise you have no power. We maybe carriers of a disorder as parents, or Adam has sporadically got a mutation. Nevertheless our day to day will not change, and a name helps with prognosis and management only. Adam is and will remain our much loved beautiful boy.
We do not let labels define us. Adam is a very happy and determined child. He pushes barriers and exceeds consultants expectations daily. May he always continue to do so. God Willing. Daily struggles we face are things like aspiration and choking risks, low immune system, Hypotonia (low muscle tone), GDD (Global Developmental Delay, Sensory Processing Issues, Non verbal and Non walking upon others.
We as a family see huge benefit in therapy for Adam and have been pursuing different avenues such as CME (Cuevas MEDEK Exercise), Hydrotherapy, SALT (Speech and Language), Conductive Education, and physio.
We are pushing for these, as an infants brain is very plastic and malleable. Therefore early intervention is key to form new pathways and bypass dead and injured areas of the brain to function. This is slower than the conventional method but we accept Adam exactly the way he is, and understand his path will not be the same as other children and that is ok. He is honestly a superstar, we as parents want to ensure he gets everything he needs to thrive and have the best quality of life available to him.
We have been accepted to go to NAPA in Los Angeles for a 3 week intensive programme, a world renowned therapy centre that helps children with a vast range of conditions such as: cerebral palsy, genetic conditions, other neurological and gross motor issues just to name a few. This will take place in summer of 2021. We absolutely believe that this will improve Adam's chances of walking, communicating and feeding as a minimum. We want to ensure Adams quality of life is the best it can be, we as parents can only pave pathways and give him the best options out there so he thrives.
We have been blown away by the interest friends and family have shown in wanting to help Adam get to NAPA. Its unfortunate that the best therapies out there tend to have hefty price tags. We are also combining a multitude of therapies. The biggest task was securing dates for NAPA approximately each slot has 300 applicants. This just highlights the demand as people have seen the great results in doing these intense therapy sessions.
Feel free to donate as much as you'd like, and we'll keep you all posted on Adam's progress.
Due to the very generous donations we have received, we have increased our targets.
Anything in excess of what is required to get Adam to NAPA, will be used here in the UK for his continued therapies.
Lots of love from us and super wet kisses from Adam.
Feel free to follow our Journey on Instagram
Links to NAPA Centre below:
- Sana Allie
- Sarah Begg
- Kash Baig
- Taranjit Basson
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