"Travis has a neuro-muscular disorder called Spinal Muscular Atrophy Type 1. It affects the motor neurons in his spinal cord which means he is unable to move any of his muscles freely. It affects every muscle in his body - It affects his chest muscles, so he is unable to breathe easily. It also affects his ability to cough and swallow making it difficult for him to manage secretions. This makes his respiratory system very fragile and also makes him very susceptible to chest infections.
From birth it was clear Travis had problems. Testing for infection started from when he was born as he was taken straight to a special care baby unit. At 2 weeks old, when all infection tests came back negative and he was not improving, genetic testing was started. Genetics took 3 weeks to come back and Travis was officially diagnosed at 5 weeks old.
Travis is receiving palliative care, our main aim is to make him as comfortable as possible as there is no cure for his condition.
Travis has nightly BiPap and oxygen when required. He also has medication to help with managing secretions and medication for pain relief. He has regular antibiotics to fight off possible chest infections. Travis can suffer with anxiety, due to the fact he has to work so hard to breathe, and can sometimes feel he cannot breathe properly, so he also receives a mild sedative that helps to relax him when he is experiencing anxiety.
Travis’ consultant has advised they believe his long term prognosis to be 6–8 months old. As he gets older and grows, his muscles will deteriorate and his respiratory system will not be able to sustain itself. There is also the worry of infection and illness throughout the winter months.
Although Travis cannot move himself, he is a little boy and prefers nothing than you giving him a hand to ‘bosh’ his toys around! He loves sensory toys, and has a sensory den at home with fibre optics and a bubble tube. He also loves being out in the fresh air, watching the trees overhead as we push him in his pram.
Travis favourite thing to do is just to play. He loves listening to stories, and his face lights up when you play peek-a-boo and do silly things with him.
The photographs we had thanks to The Butterfly Network are much more than just photographs. They are memories we will cherish forever and something we will always treasure. Every single day we have with Travis is extremely precious; to be able to have beautiful photographs together as a family mean the world to us. They show us together as a family and show the love we all have for one another.
A massive thank you to Lorna from http://photographybylorna.co.uk/ and https://www.facebook.com/Photography.By.Lorna?ref= for the beautiful images.
For more information and to follow Travis' story, please visit his Facebook page at https://www.facebook.com/TravisKeseru
What an absolutely stunning set of images of a beautiful boy and family. x
Beautiful photos of a beautiful family, well done Lorna! :)
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