Adventures with Mr Beau Jangles
Just4Children are raising funds for therapies and equipment that will help Beau reach his full potential.
This is our beautiful son Beau. At the 20 week scan it was noted that Beau had club feet but we were assured that this was easily correctable. Little did we know the actual extent of our boy’s issues were going to turn our world upside down.
Beau was breach, so a Csection was booked. It went smoothly and we were overjoyed when we found out our little girl had a brother. But I remember the midwife’s concern as I saw his legs. They were motionless and didn’t look right. She told me not to think about his legs and look at his beautiful face. I held on to that feeling of joy for as long as I could before the paediatrician took him away.
Beau was assessed and we were told it looked ‘syndromic’. He was born at 1.00pm and at 7.00pm it was noted that his right leg was broken in 2 places. He was taken from us and put on morphine and tube fed. The next day he was taken to Sheffield Children’s Hospital for tests.
Beau was born with a random genetic change in the gene DYNC1H1 which has caused polymicrogyria, arthrogryposis and a form of spinal muscular atrophy. We now follow the winding unfamiliar path of Special Needs, and so far, with a few bumps in the road here and there, we’ve managed quite well. The NHS have been brilliant but we now feel it’s time for something more.
So we need help to raise some funds for private therapies. As yet Beau cannot sit up without support and has no words but he’s a boy that is not to be underestimated. We’re hoping to develop his progress with Movement Lessons. We would like Beau to have some intensives with the UK ML practitioner and we hope to visit Arizona for a week’s intensive course.
We are also hoping to start Talk Tools speech therapy and have an assessment at Brainwaves.
Beau has already been through 4 surgeries and due to have a huge operation to construct a left hip socket. Beau is an awesome little dude who charms everyone he meets with his enormous eyes and even bigger smile. He has made great progress and surprises us regularly. He is loved by his sister and baby brother and loves them back. We really feel with these therapies he will make the progress he’s destined to.