Leo was born at 39 weeks, he needed some assistance and he didn’t cry for the first 8 hours. Now he is 2 years old and has had a busy little life so far, he was in hospital for 5 months from birth where he was diagnosed with a duplication on chromosome 12 long arm (12q.12q.21.1). The size of his duplication is rare and he is the only one known with it so we don't have any answer it’s just wait and see.
The way this affects Leo is medically and developmentally he is behind in his development but has emerging skills so he has just started to sit up with help, he isnt able to stand or walk. He is rolling and grabs for things, he is vocal with lots of sounds but no words. he is very smiley and has a fab team to support his development.
Medically Leo is a fighter he had open heart surgery at 9 weeks old to close multiple Vsd's / Asd's and his airway into his left lung had to be reconstructed. He is fed via a button as he suffers from reflux and has an unsafe swallow. he requires oxygen at night due to a chronic lung diagnosis and is constantly snotty and coughing, we have had numerous picu admissions since birth but Leo fights his way back to good health each time these have mainly been for respiratory infections. Leo also has a Baha hearing aid which we try to get him to wear as often as we can this can be a battle at times
despite all the above Leo is a very happy child.
A worry as parents is that as Leo gets bigger and heavier we are going to need help lifting or carrying him either just to move him or to wash and cloth him. It would be nice for him to have some form ofindependence.
Very soon we are going to be in need of specialist equipment, hoists and even home adaptions. Leo is in need of physiotherapy and maybe specialist treatments.Please could you help to raise funds to enable us to give Leo the very best of opportunities and even some of his own independence.
Uncle Mark Rounce is starting the fund raising by running the Humber half marathon for Leo..